Horrors of the War, Soul of the Warrior

I know it has been some time now since I posted an update here. I also know there are so many people who are very concerned and yearning to know how Amos is doing. What has transpired over the Christmas holiday weekend in his battle has been nothing short of a nightmare. I have to be honest. I could not even think about trying to write about what was transpiring while we were in the heat of it. However, now he is doing a little better, and I feel like I can finally breathe enough to be able to post an update to catch everyone up. 

^Christmas Eve morning, and I arrived at the hospital after a night away to try to recuperate and snuggle up our puppy, Murphy, at home. Winter had finally arrived in the valley, and upon entering the hospital I thought how the building really is beautiful with freshly fallen snow on the festive holiday decor. I was feeling rested and ready to see my little boy. At that point, Amos was still doing pretty well maintaining his place just ahead of the healing curve expectations. However, as the day transpired that would all change. He had been experiencing some liver issues in the days prior, and the doctors began treating him for a liver disease called V.O.D. with a drug called Defibrotide. Amos' bilirubin levels were climbing, and they wanted to get started on treating it right away. The drug takes 5-7 days to start working, and they wanted to get a jump on it before the bilirubin counts got much higher. As they expected, the bilirubin levels indeed continued to rise over the week, and also a lot of fluid began accumulating in his abdomen applying pressure to his lungs. Come Christmas Eve day the staff became much more worried about his breathing. They had decided it was time for him to go down to the PICU for more intensive care. 

^In the PICU room Amos was fitted for a CPAP breathing mask that would force more oxygen into his lungs relieving some of the burden of the labor of trying to breath all on his own. Apparently, little kiddos can work so hard when they are laboring to breathe that at some point they will just tire out and stop. Obviously, they wanted to avoid this. Also, he was still retaining more and more fluid, which was further deteriorating his situation. Then, at 2am the PICU doctors decided that his breathing situation was getting worse enough that they should intebate him with a breathing tube on the ventilator to take over more of his breathing for him. He was scheduled for a procedure to put a drain in his belly to tap off some of the fluid in the morning, and they would need to intebate him for that anyway so they surmised that they might as well get him on the breathing tube at that point. They got it in smoothly, and so I left Christine in the PICU room to return to our room up in the cancer unit to sleep. Only one of us was allowed to stay with him down in the PICU. Then a few hours later I was awoken by a social worker telling me to get my shit together immediately and come with her because there was a problem downstairs with Amos. As we ran downstairs she explained to me that Amos had slightly come out of sedation and went absolutely ballistic trying to fight all of the equipment off himself. Christine and his nurses were trying to calm him down when he managed to displace his breathing tube, at which point he stopped breathing all together. The nurse hit the alarm and the place went into full on Hollywood style life saving mode. Apparently, gobs of doctors and nurses busted through the doors rushing in to begin emergency actions. Christine was pushed to the back of the room as the team got down to the immediate business of restoring his breathing and reintebating him with the breathing tube. I came running around the PICU reception desk just in time to see Christine waiting outside his room looking as though she was going to puke all over. She ran to me as I approached her. I grabbed her and we left the unit. Christine could hardly walk, but as we entered the waiting room a doctor quickly emerged to tell us that they gotten the tube back in, he was stable again, and we could go to see him in a moment after they got his room cleaned up. His heart never stopped beating, but Christine was sick to her stomach at the sight of her boy's breathing having stopped. 

^We returned to the room and this is what our little boy looked like. Swollen so much, and a machine breathing for him was more then either of us could bear to see. I don't think I will ever have the words to describe what it does to a parent to see their child like this. Those who have walked this mile know it too horribly well. Amos was in rough shape. 

^The point of view of helplessness in the PICU.

^Later that day he went down to a surgical room for the placement of a "pigtail" drain that would hopefully relieve some of the pressure of the fluid on his abdomen. It was a scary ordeal because he would run the risk of bleeding out, and infection as well. 

^Thankfully, the procedure went smoothly, and when he was returned to the PICU room we were able to see him again. Immediately, we could tell the swelling had come down. They tapped nearly a liter of fluid off his belly already at that point. 

^The fluid bag on the end of the drain. By the end of the weekend they would tap enough fluid off him to fill the empty two-liter coke bottle in your garbage can amounting to nearly four pounds of weight loss for him as well. The pressure relief also served to relieve his lungs as well. However, there was still a good amount of fluid in his lungs yet so the ventilator would still be needed to breathe for him.

^With fluid still coming off and the ventilator keeping him stable he began to improve. His bilirubin count leveled off slightly. They began turning back his ventilator support, and Leonardo the Ninja Turtle kept watch over him. Then on Sunday night they prepped him to remove the breathing tube to let him try breathing on his own. They needed to bring him out of sedation so that he would be alert enough to resume breathing on his own. As he came out of sedation he slightly opened his eyes and he looked at Christine and I for the first time in four days that felt like four years. We joyfully said hi to him and spoke encouragements in his ears to reassure him that he was okay, we loved him, and that we were so proud of him. 

^With the breathing tube out the binky was back in. He was handling breathing on his own again like a champ. He had literally gone to the brink, and was now coming back to us little by little. He was still so far from out of the woods yet, but he was improving. Even as he laid barely conscious, shallowly breathing, and hooked up to so much hardware, it felt like a victory. A small victory, but after four days in hell Christine and I were ready to embrace any sign of light.

^On Tuesday morning he was breathing great. His lungs were getting stronger, his liver was showing signs of improvement, the fluid was still draining well to the point that they decided it was time for him to leave the PICU to return to his old room up on the cancer unit on the fourth floor. Another little win. Another sign of improvement. Amos still has a long way to go, and we are so apprehensive to say that he is starting to turn the corner. He is still dealing with the V.O.D., some concerns for another issue called C.M.V., and his kidneys are still stressed. So we still have a long road to go. We are also still awaiting engraftment of the transplanted stem cells that will build his immune system back up. His little eyes are really yellow due to the high, yet declining, bilirubin levels in his blood. However, looking into those little yellow eyes has never felt so good.

^Today he is responding to us. He is watching his favorite cartoons again and pointing at their antics. As I leaned in to give him a kiss this morning he grabbed one of his favorite toys hanging from my neck, my sunglasses. He even managed a slight smile and little noise as he played with my sunglasses just as he always has. However, I had to leave the hospital to go to work. I couldn't help but smile as I stood by his crib side because I could see my little boy again in those tiny little eyes, that slight smile, and that little bit of baby talk that was lower then a whisper, but louder then the roar of the mightiest lion in my heart. So to stick with my previous metaphor, it seems that Amos has crossed the valley of the shadows of doubt, waded through the treacherous moat, knocked down the cancer castle gates, and cut down the evil hoard army within. Now he climbs the steps to confront the throne, and slay the enemy cancer once and for all. Continued improvement and engraftment are the key targets now. Amos must find the strength after such an arduous battle to climb that final staircase, face the enemy cancer so close to smell the vile breath of the beast, and raise his sword yet again to cut down the cancerous beast. Then we will be able to begin the journey towards going home to rest and heal from his wounds. So please keep Amos in your hearts, your minds, your prayers, your vibes, and everything else because he is proving its worth. He is proving his warrior soul. He is proving to us all that even the smallest of boys can fight with mightiest fortitude of the human spirit and deepest the depths of the warrior soul. A fight so incredible that this hard-nosed father stood completely awestruck beside his crib trying to leave for my work shift, humbled, and forever changed as I looked into his eyes and told him just one more time before leaving that I love him, and I am so incredibly proud of him.  

Gratefully Thanksgiving

Thanksgiving is a time of year in which we give thanks for everything we have in our life. It could have been very easy for me, and my family, to be cynical about that concept this year. If I am honest, at time, I have. However, as we celebrated the day at home with my parents and mother-in-law I found myself as thankful as ever. Maybe even more then ever. This whole war with cancer has been awful for sure. No denying that with a bunch of positivity slogans or memes. In my past I have always championed living in the moment with as much zest and fervor as possible. Then Amos was diagnosed with cancer, and for a while I was finding myself wishing away time until the day he was all better. Somewhere along the way though I realized that I did not want to do that anymore. Although, as I said, this time has been so awful at times, it has not been all awful all of the time. There have been moments of nothing short of mind blowing inspiration, and brief respites of pure joy as well. I don't expect anyone to necessarily understand, but it is true.    

^Seeing Amos and Grandma Kay watch the Thanksgiving Day Parade and giggling their way through playtime on a beautiful fall afternoon is a moment of thankfulness. The thing about terrible moments is that if you don't allow that moment to take over the rest of the moments to come then it can actually serve to make the good moments seem even better because of the appreciation in the contrast. Much like I have learned in my risky career choices that one never feels so alive as when they just cheated death, the same is true for moments of joy and sorrow. The depths of despair serve to make the heights of joy feel all that much more glorious. 

^Nonni and Amos reading stories after a huge turkey dinner in our own home leads me to beg the question, "How can you not appreciate and be happy in this moment?". Just a few short months ago Amos would not be with us if not for the miracles of modern medicine. This moment with his Nonni is a result of a second lease on life. Amos will never really understand this, but I hope he doesn't have to for a while and gets to grow up just like any other young kid who doesn't get it yet. 

^I am so grateful that he gets to nap on his Grandpa's chest with full bellies of turkey and all the dressings. We were fortunate to have a long home stay leading into the transplant round. Unexpectedly, our home stay was slightly extended when Amos' bone marrow donor received an unfavorable diagnosis on a biopsy of his leg disqualifying him as a donor. It seems that our donor may have learned he will have to face some health issues of his own as a result of attempting to donate his marrow to our son. We have no idea who he is or what ails him, but I wish him the best. As a result, our timeline was delayed a few days requiring us to move to our second donor, which is going to be harvesting stem cells from the donated umbilical chord of some mother and child creation. Yes, that's right I said stem cells. I have come to a greater understanding of what that politically charged term actually means and for us it will hopefully be a life saver.

^We got the call on the Monday following Thanksgiving that they had the umbilical chord all lined up and they were ready for us to come get started the following day. We successfully prepared as best we could to get ready over the home stay. We were able to fatten Amos up an additional three pounds and he was rested, plump, and happy. We suited our little boy up in his samurai suit again and marched into battle. The first dose of the chemo drug Busulfan came at 5am on Tuesday morning, and the charge of the cancer castle was on.  

^Our little warrior is so tough and prepared that he is unfazed at the prospect of chemotherapy. He just maxes and relaxes his way through the dose each day. Amos has handled the nausea like a champ so far as we have now progressed through the four-day regimen of Busulfan. He received one day of rest before the next four-day chemo round of high dose Cytoxin. This dose of Cytoxin is the big "sledge hammer" treatment that will totally wipe him out. He will basically be poisoned to within inches of his life and then kept alive through the worst sickness most humans could ever face with artificial interventions of medications and careful monitoring. Mouth sores, seizures, fevers, infections, and all kinds of other possible complications await us in this final battle to win this war. However, we are ready to fight. 

^As we toil through the hardships of this treatment to end this cancer once and for all we must all try to remember that although life can be horrible sometimes, it can also be so wonderful. That the very nature of this in the human existence is necessary to actually be able to fully appreciate the wonderful moments of our lives. I am reminded of a lecture I watched once from, David Steindl-Rast, in which he explains how we have all gotten the concept of gratefulness and happiness backwards. Happiness does not create gratefulness, but in turn it is the grateful person who finds happiness. One who can first be grateful to even have the opportunity to live this human existence will find that through gratefulness for each moment of life, happiness will be found. Not every moment can be happy, but excepting that each moment is its own slice of time and being grateful for even having the chance to experience these moments leads to the next moment and the chance for that moment to be a happy one. I encourage clicking the links I made to watch the lecture. It really is quick profound, and especially within this context of my son's fight. So as the first dose of the dreaded Cytoxin slips into Amos' veins and we await the terrible turmoil of the side effects to come as we march headlong into the greatest battle of our lives, I find myself a grateful man. Grateful Amos is still alive to have the chance to fight and win. Grateful to have the sweetest little golden puppy and the strongest woman I have ever known by my side as we wade across the moat of cancer's daunting castle behind our little samurai warrior. Grateful for my parents, my brother, my in-laws, and all of the people who are taking up arms behind us. Grateful for modern medicine and the unrelenting labor of the staff of this world-class hospital, Primary Children's Medical Center. Grateful to even have had the chance to know this amazing little boy we have named Amos. Despite enduring the worst of moments he somehow still manages to find reasons to smile through all of it… and that little tiny smile makes me so happy. Even if only for a moment. I have learned that moment is about as good as it gets, and I am grateful for each and every one.

David Stendl-Rast's Ted Talk lecture, "Want to be Happy? Be Grateful":

http://www.ted.com/talks/david_steindl_rast_want_to_be_happy_be_grateful?language=en