Our time at home was so special. It felt like a gift. I was having a hard time leaving him to go to work every night because it felt like I was missing an important time with him. Due to the severity of his illness I can't shake the feelings that I need to be with him as much as I can now in case I don't get to someday. I know I have to stay positive for him, but those fearful doubts have a way of working their way into my head sometimes. Just before we were set to check back into the hospital to begin round two of chemotherapy Amos had some testing done to determine whether or not he will require a bone marrow transplant. To our dismay the tests showed that he would indeed have to receive a transplant. For those of you who desire the medical details, Amos' blood showed that he retained 2.6% Leukemia cells, which is still too high for an intermediate risk treatment plan of straight chemotherapy. So now we have to go the route of a high risk plan, and a bone marrow transplant. He will receive this round of chemotherapy while the doctors here dig into the bone marrow registry to set up a compatible donor and get everything in line to be ready for him when the time comes.
^On Friday morning Amos suited up in Samurai warrior gear complete with swords and ready to kick some cancer ass with a smile on his face. We packed up our suitcases and a pile of toys to check in for another month-long treatment. We felt like cagey old veterans coming back into the hospital. When we checked in I spotted a weary dad with tears in his eyes and a haphazardly loosened neck tie like he just ran out from behind his desk to get to the hospital. I saw him again the following morning still donning the same business formal attire and beaten down look on his face. I knew his pain. I wanted to give him a hug, but it seems most of the families around the cancer unit kind of keep to themselves. I have chatted with a few parents in here, but it seems most just want to keep it casual. I have pondered on this observation. The only conclusion I can come to is that we are all in a life and death struggle with our children and each of us have gotten the statistics that say that some where around one in four of these kids are not going to survive their fight. The only thing I can think of is that each of us knows this and in a sense we refrain from getting friendly with each other because as the numbers go not all of us are going to get the outcome we want with everything in us. It is not that we are rooting against each others kids in the unit, but we are all rooting for our own kids. However, if one kid survives then conversely that kind of means that one of the others will not. It really is a day to day thing for each of the many families in the unit.
^Amos is a happy boy still though, and that is all we can focus on. We try to get as many smiles and giggles out of him as we can, and we put each one in our pocket like it is the real currency of life. As our doctors explained the next route of treatment with the bone marrow transplant I waited to ask the question, "What happens if the transplant doesn't work?" The doctor answered as softly as she could that if the transplant fails there will not much else left to do. Christine and I had a real moment of pause at that point and contemplated that outcome for only a moment before we both snapped ourselves back into the present time and place of a happy smiling boy who needs us. The thought of "nothing else we can do" has been a hard outcome to consider. We simply default back to positivity, our day to day tasks of caring for him, and getting as many smiles out of him as we can. It lingers in the back of my mind, but I am quick to get the horse back in front of the cart to stay in the moment. Too much big picture thinking can tear one up inside. It is a constant battle to stay present and positive. I have always been one to try to live that way, but it is a conscious effort each day.
^Watching Amos wheel his baby walker toy over to the sink and go to town on the plumbing fixtures was one of those smiley moments that feels like gold. I promptly sent his Uncle Tyler, a plumber, some video of Amos going bonkers over the hot and cold valves and the P-trap. Tyler thought that was hilarious. So did Amos, and me too. Maybe Amos can take over my rental properties someday after all. Seems he is taking to the work quite happily. Of course, when you pull about six months worth of your tenants hair and soap scum out of a clogged P-trap that enjoyment can turn to gagging rather quickly. I think he will be one tough character that won't be phased by a whole lot in life after this.
^Play hard, sleep hard. Like I've said before, if you didn't know better right now he seems like a regular kid who loves to play with his toys and his momma. His crib turns into a smorgasbord of Ninja Turtles, blocks, balls, rattles, and toys of all shapes and sizes. We have to keep the selection fresh for him until eventually he plays himself all out and the next thing you know he is passed out amidst a pile of toys. He is just too damn cute. Sometimes I can barely handle it. This scene just cracks me up.
^The nice thing about the location of Primary Children's Hospital is that it is nestled right up against the foothills in Salt Lake City. Christine and I trade off shifts to get a chance to get in some exercise in the hills. The elevation helps gain perspective and some endorphins to keep the body, mind, and soul all going strong for him. Sunset is a special time to me, and getting to watch one from time to time in the hills is food for my soul. The hospital and the fight can wear on me. Getting outside and up high always comes to my rescue.
^The mountains and nature have always been a refuge for me. The mountains have always been there for me when I need it the most. I have found purpose, love, and myself in the mountains. However, they have recently showed me that it was not them that did this for me. They simply served as the catalyst that allowed me the ability to channel the spirituality I always had within me. They were the conduit that allowed me to open up to what was always there. These lonely flowers made me think of Christine and I growing together in the sea of grass that is this human existence we stumble through. I have always felt like I was on a journey searching for answers, but now this whole ordeal has served to show me that there are none. There are only more questions. To expect to find absolute answers is futile. Religion calls it faith. I don't have a single word for it, but I feel it now. I have always been a natural leader. People have always looked to me in times when someone has to step forward. I almost always rose to the role. I have not always succeeded, but I always tried my best. Now in this situation there is no where to look for an answer or a solution. Christine and I are helpless to do anything to fix Amos. All we can do is love him everyday that we have him, and maybe that actually is the answer. It is not the one we all want to hear, or the one I want that can fix him. However, it may be the only answer we have to anything in this human existence. I have been the one that is looked to amidst what I call the fog of chaos. The fog of chaos is when life and death are hitting the fan. The most intense situations life has. Often in these situations people look to someone to tell them what to do. For some reason I have always been that person that everyone is looking at when the fog rolls in. I have made both right and wrong calls in the fog, and those moments will haunt my dreams forever. Not many people will know what it is like in the fog of chaos. Soldiers of war talk about it, and it seems some people who have led lives similar to mine can speak about it as well. Otherwise I can't really explain it, or why I seem to be able to step forward when it takes over, but I do. However, now there is nothing I can do. It eats me up too. I want to do this for him and there is nothing I can do. I have rarely been powerless in my life. However, here I stand powerless and helpless to fix this for the two people I have sworn my own life for. I would trade places with him tomorrow, but that is just not something I am able to do. There is no answer. No right one, and no wrong one. There is only what will be, despite anything I wish I could try to do. So while there are no answers or actions I can take to fix him I will simply look inside myself, to my wife, to my family, to my friends, and most of all to Amos to give and receive as much love as my heart can handle. It is all I can do, and it might just be the only real answer to anything. Love.
