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

A Little Help From Friends

My wife, Christine, is nothing short of miraculous in my mind. Now more then ever. I have always admired her for many reasons, but watching her rise to this occasion with our little boy has been one of the most amazing things I have ever seen. Christine would be the first one to admit to most that she was never a domestic champion before we decided to start our family. One of my favorite qualities of her's is that she is the epitome of a modern independent woman that has never needed a man in the traditional sense of a machismo bread-winning care taker. This is something that was actually a concern of hers as we planned our family. She had doubts about her own ability to become the mother she wanted to be. However, even before Amos got sick I was astonished at how she took to the role of motherhood so much more naturally then either of us anticipated. Then, when Amos got sick she rose to the occasion beyond what I had ever imagined. I have to be honest in admitting that the burdens of this battle with cancer for Amos has fallen more on Christine then anyone. Amos doesn't really know what is going on, and as such also doesn't really know any better about what his life is really supposed to be like. He is just a happy kid. For us as parents it is the worst thing short of loosing him that I can imagine, and if I am honest it is even worse for Christine then me. Yes, Amos needs me to be there for him and be a good Dad now, but more then anything else in the world… he needs his momma. She feels this in her heart as well, and the emotional burden for her is unrelenting and incredibly powerful. I can empathize and appreciate it, but I don't think I can fully understand. I was beginning to notice the toll it was taking on her health and temperament. As hard as I tried I could not be of much relief to her though. What she really needed was to clone herself a time or two over. While that is obviously not realistic we were about to receive a little help from friends that was exactly the proper prescription for her.   

^Abbey Gehring and Amy Joyce, left their busy lives in Wisconsin and came to help their dear friend in need. Christine grew up in the same hometown as me. As such, she also has been privy to the same kind of small hometown friends that I have been fortunate to have. Christine has a group of girlfriends from back home in Wisconsin that are the kind of lifelong confidants that drop everything and show up when you need them most. The kind of friends your kids call Aunt and Uncle despite the lack of a real descendant. Pictured above, Amos snuggles into a story with his Auntie Abbey. As I said, what Christine needed most was a clone, but since that was not happening the second best thing in my mind is another fabulous mother that is sewn from the same cloth as my wife. Who better then her dearest friends who have themselves become excellent mothers since the days we all shared as young crazy high school kids.   

^Abbey came for the first week, and then Amy came for another week after Abbey. You see, Christine didn't want or need time away from the ordeal with friends to recharge like I did. She wanted help in the overwhelming duties of mothering not only a kid with cancer, but a baby boy with cancer. One-year olds are a lot of work all on their own, but add in the demands of cancer and the task is nearly impossible alone. Abbey and Amy came and cooked, cleaned, baby sat, changed diapers, fed Amos, helped with doctor visits and all kinds of other invaluably helpful assistance. They were the next best thing to a perfect clone of Christine. 

^After Amy took over and Abbey went back home to her own young family her birthday came. Christine, Amy, and Amos posed for this celebratory picture to send to Abbey for her birthday. We celebrated for her, and either way it was a good reason to put an adorable party hat on Amos. The smile on Christine's face says it all. I don't expect anyone else to notice, but the light behind her eyes in this photo is brighter then it has been in quite some time. All kidding aside, I really can't express how big of a deal it was for us to have these two come help us out. When my friends came they served to come take me out of it for just a moment to gain some perspective, and as a result, some relief. When these ladies came they served to jump into Christine's perspective and lighten the load that I could never take off her. I was amazed at the impact it had on Christine. One night as Christine, Amy, and Amos had an impromptu dance party in the living room the whole house filled with the giggles of two grown woman and one little boy. I sat back into the couch and watched as my recently stressed, tightly wound, and overwhelmed wife turned back into the light-hearted beautiful happy woman I married and started this family with. The whole scene seemed to turn to slow motion and I nearly cried as I watched Christine dance around our giggling little boy with her oldest friend in the world donning the largest and lightest smile I have seen on her face in a while. It looked like I can only imagine it would have if you rewound twenty-five years to a bedroom sleepover scene of these women as young girls dancing on a bed late at night to some boy band without a care in the world. In the midst of this most difficult of battles fighting cancer with our son, there was a fleeting moment there where it was just two dancing girls, and one happy little boy, giggling like time was standing still and none of us had anything to worry about. It was like magic. Abbey and Amy's timing could not have been better. Christine has a burden in this cancer fight that even I can not fully understand. However, her friends understood her, and what she needed. They came to her rescue, and as a result mine as well. I was struggling to help my wife and was ill-equipped to do so, but Abbey and Amy had all the right tools. As I have now said so many times, I don't think I can ever properly thank them for what they did for us. My only hope is that they saw the truly genuine smile on Christine's face and the light in her eyes that they gave back to her. We are getting ready for the transplant round and the most difficult stretch of this war to date yet. Abbey and Amy came right in time to help us get our hearts and heads in the right place to take it on.  Now we are recharged and ready to forge ahead. This war has wounded us over and over, but throughout each battle we have been aided and healed by the people who care about us. There have been many times we were both unsure if we could keep fighting, but here we are now approaching the final battle and we stand ready once again with full hearts and sound minds due in large part to a little help from our friends.

Fatten up!

Amos has just finished up his third round of chemotherapy. He has been handling it so well, and I am so proud of him. He is just a happy little kid who wants to play and snuggle with his Momma. While life for Christine and I has come to a halt, Amos continues to grow. He doesn't know any differently. He doesn't know that he is supposed to be learning to say Christine's new title, Momma. He doesn't know that he is supposed to be learning how to share and giggle with other kids, or taking his first steps. He just goes about his days as happily as he can. I can't believe it sometimes, but if more people could have his attitude rub off on them just a little this would be a much better world. 

^This photo breaks my heart if I am honest. Before Amos got sick he loved playing with other kids. His babysitter's house was always full of young jubilant kids, and Amos would get so excited to see them each day. He still gets pumped up the rare times when he does see other kids. This beautiful little girl who also is fighting cancer came to his window. The two where checking each other out through Amos' room window. Amos was still not allowed out of the confines of his room, but he was so excited just to see another baby. Seeing these two little warriors smiling and looking each other over through a window is a fitting metaphor for his life right now. It makes me sad that they can't play together, but it also keeps me awestruck at how these two little ones are simply pleased to be seeing each other through a window. They are just happy kids, and that makes me smile right through the tears welling up in my eyes. It kind of goes to the heart of this whole ordeal.

^Just after Halloween Amos was allowed to come home. We will have a good amount of time at home before the transplant round to come at the end of November. I am gonna take advantage of each minute, and we have been given the mission from his dietician to fatten him up to get ready for transplant. 

^Grandpa and Nonni took advantage of the home stay flying into town to hang out with Amos. Nonni cooked up all kinds of good home cooking and some high calorie eats for Amos to gobble down as well. While our mission is to get Amos to put on weight for the transplant, it seems he is also getting a chance to fatten up his heart and soul as well. Even more so then the high calorie potatoes and gravy he is getting a healthy dose of family loving as well. 

^Whether it is fun time with Grandpa...

^…or snuggles with Nonni, Amos is getting his fill.

^Nonni and Grandpa are too!

^So much so it wore them all out. Maybe it was all the food too. 

^Grandpa and Nonni did all the squeezing and loving that they could while they could. After a few short days they had to go home. We have a few more weeks at home yet and more visitors to come as well as Christine's lifelong friends Abbey and Amy are next to come help us out. With the transplant round the veritable storming of the cancer castle coming ahead we are all just trying to concentrate on the present and the tasks at hand, fattening up Amos' body, heart and soul with all the calories and love the little man can handle. So we are not thinking about all the hardships we will endure amidst the final battle of transplant because right now he is a happy kid who needs nothing more then a good meal, a big hug, and plenty of kisses. We are all more then happy with that for now.

Home Free into Round Three

^A short time ago now we busted out of the hospital for a really short week. It was a good week though. Round two was a tough one with some scary fever side effects to the Ara-C chemotherapy drug. One incident involved a vagal maneuver in which Christine walked into the hospital room after work just as the nurses where applying a large bag of ice to Amos' face. She nearly fainted at the sight. A vagal maneuver basically resets his heart rate, which had just had a Supra Ventricular Tachacardia spell that had him in a funk that day. It became a concern so the staff had to reset his heart rate with the icy maneuver, and just in time to freak out Momma. Amos' heart rate and counts came back into alignment and they set us on a path to return home again.

^Christine's Auntie Di and Grandma Eileen came into town just in time to help us move out along with the help of a fury friend they brought with for Amos, Fuzzy the Bear. Di and Grandma were a huge help in getting us moved out of the hospital and back into our home. They cooked, cleaned, and all around lightened our load and hearts. They're typically good for that kind of good home cooked lovin and we were so thankful. 

^My good ole' Wisconsin hometown family friend, Jay Riebolt, and his new wife, Jessica, also came to town. Jay offered up some classic comic relief and they gave me a good reason to get out in the hills again. They made the big drive up from their home in Pheonix, Arizona to see us and Amos. I had been itching to get up to elevation so a day of tour guiding these two desert low-landers was just what the doctor ordered for me. Selfies at 9,600 feet above sea level are way better then your average lunchtime selfies. Just sayin.

^I was super stoked to get up in the hills with them and show them around a few of my favorite spots. Farmington Canyon has a special place in my heart, and so do Jay and Jessica. I was glad I could bring them into that world for an afternoon and I was appreciative of the chance to share it with them. I don't get to share these kinds of places with friends from home all that often. It was good to get some high elevation mountain chill in the bones of these Arizona dry heat residents. 

^Amos is enamored by pretty ladies too! Watch out Jay!

^Crisp fall air with Momma is food for the soul to fatten Amos' spirits up before round three of chemotherapy. His cool little bear hat is just adorable too!

^Nonni and Grandpa came in for the last days of his home stay as well. All of the activity and playtime with family and friends served to make the short one week break at home fly by. Next thing we knew we were packing up our bags again and Nonni and Grandpa were helping us move back in to the hospital.

^As usual we suited up our little man in his samurai battle attire and we checked back into "hotel chemo'. It was a really quick week, and we were not really ready to go back just yet. Christine and I were both in kind of a negative funk checking back in that we were having a hard time shaking. I chalked it up to the long-term grind of this war, but we were able to snap out of it in due time to get back on track. It is tougher then we ever imagined to stay positive and grind this whole ordeal out.

^However, scenes like this of our little man bopping around in his big stretcher bed checking everything out as we pass through the halls of the hospital brings a smile to one's face pretty quickly. Even though he is getting wheeled into a bone marrow aspirate procedure he just wants to check out everyone while waving and smiling at each passer by. He is still just a happy little kid who just wants to play and giggle. How can you not smile at that.

^Goofy guy loves my thick glasses too. What a crack up!

^So "Doctor Amos, Mr. July", as goes his nickname in the cancer unit, is back at it for round three. As I write this post he is through the drug administrations and is entering what I have come to call the hangover stage of round three in count recovery. We have a few more weeks in the hospital while he recovers from this round's chemo. Then we will get another short reprieve at home again. Amos has been having some issues in a bout with a norovirus, but he is starting to come out of it now. The mission once he recovers is to get him into a good nutrition regimen to fatten him up proper before the next round. The bone marrow transplant comes next, and that will be the metaphorical storming of the castle. Transplant is the big finish. The grand pooba. The huge finale. The battle to end this war. Our little samurai has fought so valiantly that I stand in awe of his tiny yet grand presence. I can't believe all that he has endured so far, but now that the biggest and scariest battle yet looms in the near future. It made tears well up in my eyes the other day in our doctor consultation as they talked about just how gnarly it is going to be on him. I just can't bare the thought of watching him go through the toughest round yet. I am having thoughts of forging into battle behind him like a valiant samurai leading us into the unknown and inevitable horrors of this great battle to end this war. However, he is a battle hardened tiny veteran by now, and Christine and I would walk into a war of any odds with our little man, our little warrior, quite honestly the fiercest little fighter I have ever seen. Amos will slay this cancer with his mighty samurai sword and he leads the stoutest army behind him ready to fight with him tooth and nail to the glory of remission. For now we focus on the task at hand of recovering from this latest battle won, and preparing for the final showdown looming in the distance that we now have in sight. It looms just over the next horizon and it is scary as hell as we crest the ridge to see the mighty castle of cancer that we will have to conquer. Our greatest battle yet awaits us, but for now we will fatten him up, enjoy our next home respite, and prepare. The glory of victory lies just beyond our final test. While we may retain some fear for the horrors of the final battle, we are fixed on the glory of remission that will be ours after Amos slays the formidable cancerous beast that resides within the castle in the distance. He is gonna be ready, we are gonna be ready, and all of you are gonna be ready. Sharpen your spears of prayer, your swords of love, and join us forging ahead into the darkness. For the final battle to end this war is near and it will be the greatest test of us all, but the bright and glorious light of victorious remission awaits us on the other side. We must get ready!

Happy Birthd… ANC Day!

33 years ago today I was born. My birthday always sneaks up on me. I almost never see it coming. I am not much of a birthday guy typically either. However, Amos remembered. He gave me a proper birthday gift in an ANC count! ANC stands for Absolute Neutrophil Count. The ANC is the key count of some six or seven indicator count levels that says his immune system is coming back. When all the counts come up to a certain range then they start talking about letting us take Amos home for the round. I couldn't ask for a better birthday gift.

^Amos is growing up in here. It is kind of strange to me on a variety of levels, but despite going through the ringer in "hotel chemo" Amos continues to grow up. We are being instructed to get him experimenting with real food. Before we gave hime some mashed up pancake, we let him have some fun with this one. He was unsure about what he was checking out. His little facial expressions are getting more pronounced and I must say, quite hilarious.  

^Play time with Grandma Kay on the play mat is an exciting ordeal worthy of a proper applause as far as Amos is concerned. He loves to clap. He is such a happy little guy. Also hilarious.

^Yep. Hilarious

^"Gimme that!"

^Physical therapy and a check up. Amos loves playing with all the pretty doctors and therapists. He is quite the little ladies man. He was hamming it up with smiles and waves for this session, and showing off his new "sit up" move and "pull up" move. I'd like to think it runs in the family, but he has way more charisma then I do, and he is quite the little show off. When ya got it, ya got it.

^Grandma Kay is multi-tasking on the cell phone and a window show for Amos. It cracks him up too. Grandma Kay has a knack for the silliness with the little guy. She is not afraid to goof it up for some giggles. Also hilarious. 

Going home after a long hard round at "hotel chemo" is always a welcome treat for everyone. It seems we are anticipating a third round of chemo before the transplant. However, in our new existence of one minute, one hour, one day at a time I will take this gift. Hell, I guess it is my birthday, and taking him home for a bit is the best present I could have asked for. Even if I didn't see my birthday coming Amos gave us something to celebrate today. A friend advised me in the beginning of all this to find things to smile about. Today I have a lot to smile about. Despite the depths of the throws of cancer, Amos is a growing boy. A happy boy, and his gift of an ANC count on my birthday gives me a big ole' cheeky grin.   

Unrelenting Home

When I was eighteen years old I left home. Geographically, home is a smattering of small lake towns in Southeastern Wisconsin. I went to Wilmot High School and grew up skiing at Wilmot Mountain. Just like my Dad. As many young men I felt I had to go to find something. I went west to the mountains. I found my niche in the backcountry skiing world. I built a life, and when my wife Christine decided to leave that same hometown in Wisconsin to join me, we built a family. Amos is the light of our lives. He is a gift. Every day that we have with him from now on is like a second chance. Ever since I left Wisconsin I've had bouts of homesickness. I have been fortunate to land a night job with the airlines that affords us the ability to come home often. I am blessed for it. When I would come home often I would see old friends who would praise me for "getting out of here". At first I agreed, but as time and experience came to pass I began to see the qualities of these small towns beyond the geographic. I have traveled the world far and wide in my ski pursuits, and as I met many wonderful people in so many beautiful places I realized that the things that make our hometown great are far less tangible. It is less obvious then some prolific mountain range or famous sight for clamoring tourists. In no mixed words…  it is love. Love of the people who knew you before you knew anything.   

Christine and I's family put on a benefit for Amos at the Lily Lake Resort just blocks from where I grew up on the lake of the resort's namesake. Now that I am an older an wiser man I see this little lake community and the local tavern for what they are. Nothing more then the perfect place for a young boy to grow up. I know most folks of the world know that it sounds strange to talk about spending a childhood in a tavern, but this is Wisconsin. We don't expect you to understand. I used to buy candy from the bar, eat lunch during a day at the beach, and when I was old enough I learned to party there. On the day of the benefit I was able to pick up my Grandpa Don pictured above. He is the last grandparent I have on this planet. By the miracle of technology he was able to FaceTime with Amos and Christine as we drove to the resort. It broke my heart to see his teary eyes as he looked into my son's eyes on my iPhone and spoke to him like he was there. Living away from home affords me the perspective to take so much pause and solace in little moments like that. I was very emotional, and it was just the beginning of the day as we pulled into the small beach resort.

^So many volunteers like these fellas gave so much effort to pull off this amazing event. The Lagerwalls and Regniers go way back with both Christine and I's families. Our grandparents were friends. These boys and I all came up in this place. All of them have become great men as a result of the same kind of upbringing as me. You can't thank people enough for this kind of outpouring of love, and for these few guys that also include hundreds of gallons of beer as well.

^My big brother, Tyler, and his wife, Nicole, were the Chairmen of this event. I would have included a picture of her as well, but I think she would rather I did not because she was unbearably pregnant this day. So much so that two days after the event she went into labor. This crew was slaving over a hot grill all day to feed the nearly 800 people who came out to show us they love us. Nothing goes better over a hot grill, then cold beer and bright smiles.

^Lady Vols!

^Marc and Shelley Weise. Shelley is my cousin, and she is a recent breast cancer survivor. She and her husband Marc have been solid confidants to me throughout this ordeal with Amos. It is hard to explain this roller coaster to people sometimes, but anyone who has been in the midst of it knows the ups, downs, and curves of the ride. I will never be able to tell Marc how much his words have meant to me. In one of our conversations we talked about a toast over a cold draft some day. At one point near the end of the event Marc came up and gave me that proper cheers. I had not remembered it until that moment, but when he held up his glass to me it came back like a flood off the quant beach. I was so thankful for it. Shelley and Marc have had to relive their own sorrows to a certain degree as a result of Amos' situation and consoling me, and I will be forever grateful to them.

^These people who came out are all a part of me. They helped raise me. The Mathers, Ron and Laura, pictured above were a large part of that along with this whole town. It warmed my heart to hug as many of these people as I could. 

^Adam Mather is the oldest friend I have. He and I first met before we even knew better. Our parents were next door neighbors and friends, our father's worked together, and our older brothers were best buds before Adam and I were even born. Of course, we would become the kind of friends that as I traveled this world I learned that not many people are blessed with. It was the first time I'd seen him since Amos got sick. I fell apart in his embrace. That is part of the intangibles of small towns that I was talking about. The kind of love of a friend you have known and loved before you even knew why. Adam is one of a group of boys who I grew up with in Lily Lake I call the "starting five". The other guys came out to see me recently in Utah, and now I finally got my arms around Adam too. I am so thankful I could. His big brother, Graham, and his wife, Kathleen, drove 27 hours from Arizona to be there for us.. That is family kind of stuff. My brother, Tyler coined a phrase once, "Families of friends, and friends like family."

^Christine too is blessed to have friends like that. These girls are the best kind of friends that any woman could ask for. I also have been fortunate to call them friends as well, but seeing them come through time and time again for my wife has given me so much gratitude. I can never really say what it does to my heart to be witness to it, to them, and to the mothers they have all come to be. 

^Mom, brother, and Dad around me. The story of my life.

^Our old friends Dan and Kelli Fox donning their Bears attire are among all the old friends of ours that came out. Dan said it was like a high school reunion, and he was right. So many of Christine and I's friends from our lives came. It was nothing short of one of the most miraculous things I have ever been witness to.

^I gave a short speech. I barley held it together to try to convey how much it all meant to me and Christine. I talked about a road map. How cancer does not come furnished with one, how the people of our lives have become the map that has given us direction when we felt lost, and how any good map always brings you home.

^These people. They are the ones. They are the intangible gifts of a small town. They are the guiding light in dark times. I spoke to a lot of people that day, and throughout all the conversations I realized that this is our home, these are our people, and this is the kind of thing we do for each other around these parts.

^As day turned to night and the sun went down on a day I can only describe as the unrelenting love of home I fell to pieces in my big brothers arms. I cried in his shoulder for a lot of reasons, for my sick son, for our lives together, for everything he has been to me, for the family he was just about to start, and for simply flat out, everything. In that moment I could not put labels on the flood of emotions, all I knew is that my big brother had a hold of me solidly and I didn't have to be so tough for just a moment. 

^In this post I talk about the intangibles of this place that I had to leave to gain the perspective to see. I have felt it for years now as I aged and traveled, but this particular day on the shores of Lily Lake brought it all so deeply into my heart. As I said in the closing of my speech that day, "… I realized that indeed we did have a road map. This road is not guided by left and right turns or treatment plans, but by all the people who love us. And like any good road map it will always lead you home to the kind of place where hundreds of people will gather on a Sunday to tell us that they love us, we are not lost, and we never were because all of you have been with us on this road the entire way. So thank you. There really is no place like home."