The past few days...

Ammon became more and more lethargic and unresponsive yesterday. His breathing became more labored, his complexion more pale, and his parents more worried. Monday was the third day after his third chemo treatment, and the chemo treatment on Friday involved the first introduction of a new chemo medication in his overall plan. Apparently, this particular chemo treatment potentially causes severe nausea and constipation in some patients, and the magic day for this to kick in is two or three days after the treatment. Ammon hadn’t puked at all since starting chemo, but on Monday he barely kept anything down. And when he wasn’t puking, because there was nothing left, he would gag and have reflux. We were told to just keep him hydrated and he’ll pass through this ‘normal chemo’ experience. Summer and I didn’t sleep at all on Monday night, and neither did Ammon.

On Tuesday Ammon stopped puking, but he was still gagging and it looked like his reflux was causing significant discomfort. We stayed religiously on top of his feedings, hydration, and medication, and Ammon was definitely more relaxed on Tuesday. We thought it was due to the medications and just simply pure exhaustion from the experiences of the night and day before. Ammon slept fairly well throughout the night, but his breathing remained labored and the reflux remained constant.

On Wednesday, as noted above, Ammon steadily became more lethargic throughout the day. His oxygen saturation became lower throughout the day and we put him back on oxygen, which appeared to help (his sats went back up to the high 90s). When I came home from work that night, I took Coleson to pack meeting with ‘Paki’ (Summer’s Dad) and Summer was calling the doctors again to verify again if Ammon’s condition was normal with the whole chemo process. Summer talked with one of the on call oncologists and based on everything going on it would probably be wise to bring Ammon in for a quick check.

I left pack meeting in a rush and Summer and I quickly took Ammon to McKay-Dee hospital to the ER. Fortunately when we arrived there were no patients waiting and we immediately got in to see the admitting doctor. Even in the 10 minutes while we were visiting with him the foyer rapidly filled up, and by the time we were formally admitted and being shown to a room in the ER there were more than 10 people waiting in the foyer, with everything from a head injury to exhausted moaning. Once back in our room, an incredibly nice nurse started taking good care of Ammon. We relayed again everything that has been occurring with Ammon, all his medications, his medical conditions, procedures recently performed, etc. The ER doctor, Dr. Williams, came and performed a thorough review of Ammon and order IV lines be started and blood work performed. They accessed Ammon’s port, took the blood sample, and started the IV lines. Based on everything we’d heard and observed so far, Summer and I were still of the mindset he was possibly a little dehydrated and had a little labored breathing. After the blood work was completed Dr. Williams returned and with blunt grimness said, “You’re son is very very sick, and we are very concerned.” You mean it’s not just dehydration, it’s not just normal reaction to the chemo that you simply have to just endure. Apparently Ammon was experiencing extremely high glucose and potassium levels, his ANC cell counts were zero and red cell very low, and other issues. Without immediate treatments, the potassium would start shutting down Ammon’s heart. In many regards Ammon’s body was shutting down.

They started medications that would reduce the glucose levels and remove the excess potassium. They increased the flow on the IV significantly, yet he still wasn’t peeing or having any bowel movements. In fact, one of the medications given him was meant to bond with the potassium and then intentionally cause severe diarrhea to flush it out of the body (the diarrhea usually kicks in within 10 minutes of receiving the medication). However, Ammon didn’t have a bowel movement and things were not improving. The medications weren’t working as effectively as expected. When Dr. Williams visited with us initially concerning Ammon’s condition he indicated that Ammon would be transported by ambulance to the PICU at Primary’s. However, now he was indicating that Ammon would need to be life flighted to Primary’s because the ambulance wasn’t fast or safe enough with Ammon’s deteriorating condition.

At midnight, Life Flight arrived and we quickly loaded Ammon. We found out about 10 minutes before that we were mistaken and that Summer would not be able to fly with Ammon. This is when everything really started to hit the emotionally. Summer and I just felt so bad for Ammon traveling alone, or at least without family, down to Primary’s. Everything was progressing so quickly, and none of it sounded promising. It felt so horrible to tell Ammon goodbye while the engines were getting ready to go. On the drive down to Primary’s I thought repeatedly of a recent talk by President Uchtdorf, wherein he powerfully reminded us that we are never alone and never forgotten by a loving Heavenly Father. Ammon has had special angel friends with him before, particularly in those first hours of his life, and I am confident and comforted that those friends were with him again.

Upon arriving at Primary’s we quickly found the PICU and went in to see Ammon. They asked us to wait in the foyer because they were still trying to put an additional IV into Ammon, and parents sometimes aren’t good with this process. One of the nurses saw us just standing there waiting, and finally she just said, “I can’t take seeing you there…You’ve seen this before right.” Yes, dozens of times, was our response. She immediately apologized and led us back to Ammon’s room. Ammon was in an isolation room due to his white cell count being zero and other concerns. There were about six professionals in the room working around and over Ammon. They still weren’t initially sure what was going so wrong with everything, why the medications weren’t working as well as they should.

One item they realized was that Ammon’s pancreas was becoming more swollen and had been significantly damaged; he was experiencing severe pancreatitis, which is incredibly painful as well. It had essentially stopped working. They started literally pumping his body full of necessary liquids, insulin, additional antibiotics, and other treatments to take over for his pancreas and get the glucose and potassium down. His body was actually physically swelling from all the liquids and treatments. There’s a bunch of other things going on as well, but suffice it to say the most life threatening was getting the glucose, potassium, and lactic acid under control. They now have three different IV lines going into him, one through his port, one through his right hand, and the third through his right forearm. Two of the IVs are for constant medications and fluids and the third is for taking blood and other samples so the first two IVs don’t have to be stopped for those purposes. He was on oxygen already through a cannula, but they had to hook him up to a Bipap machine to do his breathing for him. Due to the chemo treatments for his leukemia all his cell counts were either very low or zero, so he has had to have several transfusions today and those levels are becoming more normal for a chemo patient. I arrived at home and in bed after 3 a.m. and Summer slept in the chair next to Ammon’s bed holding his hand. Summer reported that each time she woke up there were still 5 or 6 professionals in the room working over Ammon, performing tests and procedures.

It’s now Thursday evening and Ammon has stabilized through all the treatments, but he is still on the Bipap machine and his glucose, potassium, lactic acid and other issues are really only under control primarily because of everything they are giving him and not because his body is doing what it should. All of his other cancer treatments, the Ketogenic diet, and other items are all on hold until this gets resolved. Ammon’s been having grand mal seizures and other jerks at certain points since his chemo started, but for the past two days his seizures have gone to zero, partially because of the high glucose and other issues. They are putting Ammon on a new seizure medication that we’ve never had before and that most of the doctors haven’t even heard of, so it appears to be fairly new. Hopefully, this medication keeps the seizures away while during this process. Ammon’s oncologists, PICU doctors, neurologists, and others have all been meeting and discussing the best way to move forward on all fronts and all issues.

It really goes without saying at this point, Ammon really needs all the continuing prayers and faith that can be mustered. He has been so greatly blessed, and so many prayers have been answered, he just really needs this power to continue, and the knowledge that he is loved and supported. Miracles don’t always come in the form of “take up thy bed, and walk…”, but that doesn’t mean there aren’t miracles occurring daily, miracles of love, inspiration, understanding, faith, strength, and even health.

One other thought to share. On Thursdays they have a PICU parent’s lunch that we attended. We thought it was just an opportunity to grab some food, but it turned into an opportunity for multiple parents to connect, talk about their children, and their experiences that have brought each of them to the PICU. In many regards it was really hard to go through, but I’m glad we were there to listen and participate.

Out of Ammon’s door window I can see the face and the bed of a sweet young boy. Just like Ammon, he hasn’t opened his eyes all days, he hasn’t moved at all. In the parent’s meeting, and through tears and a translator the young boy’s mother indicated that his brain is slowly shrinking, and they don’t know what to do to reverse this. It doesn’t sound promising, in fact it is downright heart breaking. Another mother described how her young active son was riding his bike, getting ready for school, and just living life one day and the next he was in the hospital, and eventually learning that he needed a heart transplant or he would die (he was on the heart donor listing, but was removed recently because his kidneys aren’t doing well; we pray his kidneys get better so he can get back on the list). A father tearfully described how their young boy slowly became sicker and sicker, and the doctors finally discovered a tumor in his stomach the size of a football. Another young father with his wife crying next to him, described his young baby daughter coming in just yesterday with unknown issues only to learn that his baby needed critical heart surgery. “Just yesterday we were just living life, looking forward to another day tomorrow, we had no idea…” he said. He then went on to talk about how his life hasn’t recently been close to Heavenly Father, and how this experience has immediately and quickly reminded him how much God loves him, his family, and his little baby girl. Parents all around the room each echoed this same feeling, this same understanding of divine strength and love. None of these devastating experiences had pushed them away from God, but instead had been a catalyst of faith and testimony. Many expressed a uniting of families and an incredible outpouring of community support of their families and their children. Summer bravely shared our experiences with Ammon and the miracles that we’ve been blessed with on a daily basis.

All I wanted to do was hug each of these parents, to love them and serve them. I know I need to mourn with those that mourn, and comfort those that stand in need of comfort. I’ve been inspired, and gratefully many times followed through on that inspiration, to try to do this, it’s so simple. But at this moment, in these circumstances, even if only felt briefly and I felt much stronger just a short time later, I just didn’t have it in me, I was just too exhausted, just so much has happened over the past several days. I didn’t have the courage or strength to put my arms around a sobbing mother who doesn’t speak English, and just let her know she’s not alone, we are all doing this together. I am amazed at the pure love of the Savior, who even in the final moment’s of His mortal life was still taking incredible concern and love for His mother and for those around Him. I want to be like Him, and in this moment I wasn’t quite there. However, we are all learning eternal things from these experiences, no matter how difficult the experiences are or how rapidly they keep coming, for me and Summer, we will not forget these parents and children here. I hope to be blessed with inspiration on service we can do in the future to make these experiences easier for everyone here, whether it’s sponsoring meals or treats to be brought in to the hospital more often, blankets for the children and the parents, or just simply a note of encouragement and love. I think that’s what the Savior would do, quiet simple acts of love and service. It is clear that Ammon is not required to pass through these extreme experiences for himself, but more so for the growth and eternal learning of all those around him.