It has been some time since I posted an update. In my defense we are now getting into the heart of winter, which is a very busy time of year for me in the ski industry work I do. We had hoped that Amos would be at home by now, but it seems our little warrior indeed sustained some serious wounds during his war campaign against the cancer that ravaged his little body. His story is a harrowing one in which he fought so valiantly through battle after battle after battle in this war. He withstood multiple rounds of chemotherapy and a bone marrow transplant round that really took him for a ride over Christmas. Our little warrior was so impressive as he stormed the cancer castle and cut down the cancerous hoards and the beastly cancer king. However, as we relished in his victory and prepared to return home it became evident that Amos had sustained some injuries during the treacherous battles. Mainly his liver was wounded. During the transplant round an ailment called VOD gave us a run for our money, but then a few weeks later when his new immune system began to take hold and go to work, called engraftment, it was attacking his already weakened liver. During engraftment the doctors are constantly playing a balancing act of dealing with a situation called, graft versus host disease(GVH). Basically this means they want to try to let his immune system go to work on any lingering cancer, but not work so hard that it attacks his organs and tissues. GVH was attacking his liver, which raised his bilirubin count to dangerously high levels yet again. However, this time it was much more manageable.
^As a result, he is still in the hospital. We had hoped that he would be able to go home in the middle of January, but now we find ourselves in the middle of February and the round is getting really long. The time drags like the clock is running at half speed. My poor wife is so deep in it by now that I fear I may be helping her climb out of the hole of hospital psychosis for months after we finally do get out. She has been nothing short of heroic throughout this whole ordeal. If I am honest I have struggled hard throughout this situation in a role that I am not used to, helpless. Throughout all of this Amos has needed his momma more then anyone most of the time. While he responds to me, and I am effective at keeping him calm and happy, there does not seem to be anything that he wants more then his momma. It makes sense, but it is tough for me to see so much of this burden fall on her shoulders. I have spent most of my life outdoors in the wilderness in my various work, and the hospital room is literally a suffocating environment for me. I have dug deep giving it everything I have, but it seems at least once a week I have to remove myself from the situation to get outside in the woods. Christine on the other hand will go weeks at a time without even leaving the hospital confines. Even when I press her to escape from time to time it seems the overwhelming concern for what is happening with our little boy in each moment weighs heavily on her when she is away from him.
^Amos is also handling the long round really well. He has good days and bad days. Some days he is feeling sick and other days he is the happy boy he has always been kicking back and watching his favorite cartoons. He gets really upset when his momma leaves the room, but we'll worry about that kind of stuff later. I can tell he gets tired of being in his crib, and we try to get him out of it as often as possible. We play on the floor and try to get in plenty of ripping time in his walker. Most of the time he is hooked up to IV cords and a feeding tube, but every once in a while he gets totally unhooked from it all.
^When he gets unhooked it is go time! In this photo Amos and Christine do some cruising in the hallway of his wing in the cancer unit. Amos gets so excited to get out and about, check out all the interesting things out there, and ham it up with all his favorite girls in uniform. I was actually out of town on a ski project in the U.P. of Michigan when my Mother, who went out there to help care for him while I was gone, had sent me this picture. I must be honest in reporting that it made me cry in a cabin full of dudes on the crew. Good news is the crew was made up of mostly fellas from my family and some life long friends so I wasn't to ashamed to let them see me sad. The trip was tough to handle and my homesickness came on pretty strong one morning. I could barely hold it together enough to get out on the trail again for the day. If it wasn't my family boys making up the crew for the project then I may not have been able to. Hence why this is probably the only trip I will be able to bring myself to take on this winter outside of judging the competition at Grand Targhee just a couple hours north of Ogden, Utah for a weekend. I missed him so much, but I am so thankful for the respite to recharge. My wife is a saint for realizing that I needed it allowing me to go while she, my mother, and Grandma Kay covered for me with Amos.
^The good news though is that the doctors now appear to have Amos' liver issues under control and his bilirubin counts continue to fall now. All the while his immune system continues to build. His attitude improves each day. Although every once in a while he still has bad days when he doesn't feel good. For the most part now though he is settling back into the happy little boy he always wants to be. He is learning how to blow kisses to his favorite nurses, and getting pretty good at "Itsy Bitsy Spider" too! I am chomping at the bit to get him home, but for now we wait, remain patient, and continue to heal. So although our little samurai warrior was indeed wounded in battle, he is also healing from those wounds as we journey towards home sweet home. It will be all the more sweet as a result when he finally does heal from these wounds, ring the discharge bell victoriously, and we arrive safely at home.
