It Is Game Time!

Acute Monoblastic Leukemia. It is a rare blood cancer. It is our culprit, and the target of our war. Amos has started chemotherapy as of last night so the first battle is on. Our little samurai warrior put on his war attire and Mom folded him up a little samurai hat. Amos is ready to fight, and so are we. We have a long road ahead. The treatment plan is intense, and includes ten day regimens of chemo including two spinal column administrations of chemo in those ten days. These are then followed by three week breaks from therapy in the hospital to recover and ward off infection. Then he gets to go home for one week to snuggle it out with his best buddy, Murphy, our lovable golden retriever. The cycle will go for a total of four rounds of that regimen. After round two the doctors here will analyze his status to determine whether a bone marrow transplant will be necessary. I have to be honest in reporting that he was starting to get into pretty rough shape. His little belly had distended an additional six inches in circumference and the CT scan had shown that his tumors were growing. His little breaths were rather labored, and he was really a hurting kid. I personally was becoming really worried, and I was relieved when a diagnosis and treatment plan finally came in.     

^The warrior prepares.

^The first battle is on.

^Taking a break after the first dose of chemo and Amos enjoys playing with his brand new cellphone all his own. My cousins, Patti and Matt Robinson, sent him a package with all kinds of toys and adorable cards from their grandkids. Amos latched right on to the cellphone. In the spirit of sarcasm, my favorite humor, I am expecting a call from Verizon Wireless any day now to try to lock him into his first two-year contract. Leachers.

^Our warrior also received a new sidekick ninja bear from my second family, the Schmaling clan. Ryan Schmaling and I have been the best of friends since before kindergarten days. I have a group of buddies from the early days of my life in Lily Lake that I have come to consider brothers alongside my real big brother, Tyler. The fellas and I have walked the walk together through tragedy and championships. I recently missed out on a reunion with these guys due to Amos' battle when one of them, Ray, married his love. Ryan and I have been through all of life's milestones together, and his family is as much my own as any blood can bind. I have spilled enough of my own blood all over his childhood homes to maybe even qualify as blood relation. His poor mother, Jane, has been privy to plenty of emergency care for me as well as the rest of us. Ryan and I have won championships through a lifetime of sports together, and carried our friend's coffins to the grave in the valleys of the shadows of death. We have walked the line, and we share memorial tattoos to prove it. He will always have my back, and his family has always supported me like one of their own. I always cherish Packer football Sundays at their house and "halfer" beers from the tap over the kitchen counter with Ryan's hilariously brash father, Rich. Ryan's sisters, Renee and Jamie, are the older sisters my parents never had. When Jamie started a family with her husband, John, it was the first time I realized we were all growing up to see that we would have kids of our own that I wanted to grow up together just like we all had. Throughout this whole ordeal with Amos' cancer fight Christine and I have been astounded at the forthcoming of love and support from all our friends and family. As I have said before, we will never be able to properly repay the debt, but as everyone rallies behind us we feel so blessed for everyone of them. So in conclusion, just as Ryan and I used to chant in the huddle of our basketball team in elementary school, "What time is it!? Game Time! Hooo!"

Papa Phil & Trying to Chill

Not much to update as far as Amos' medical condition or a diagnosis today. Papa Phil Johnson has arrived to help out, and the name of the game now is just trying to get Amos to chill. He has been really fussy with side effects of morphine, steroids, and the like. We are gonna try to switch him over to dilaudid, which is a similar pain killer to morphine. However, dillaudid is administered in smaller doses, which we hope will help give him some relief from the side effects of larger doses of morphine. So far the morphine seems to be coming up short of comfort. Also, as the doses increased, his discomfort from the side effects seemed to be more of a problem then the pain. He is scheduled for another CT scan today to observe any changes in the lymphatic tumors throughout his torso, and to see if they are affecting his bowel functions.   

^Papa Phil and little Amos, just working on some chilling.

^Amos' general disposition when he is not super pissed. 

^My cousin Jenny Haas has a classic story she likes to tell about me when I was a little guy obsessed with my Superman pajamas, and especially the cape. I used to fly around the house with my cape pretending to be "a bird, a plane, no Superman!", or as Jenny adds in dialect, "Thoooperman!". One time when she was babysitting my big brother and I she had to use my cape a collateral in negotiating my behavior. She told me that she flushed my cape down the toilet. Apparently, my reaction was just too heartbreaking for her to handle and she quickly caved to my unrelenting cuteness. Therefore, when these Superman pajamas showed up at the hospital for Amos from Jenny and her husband, Lance, it brought a smile to my face, and also served as a rather fitting metaphor for Amos.

^In the grips of battle.

^We really miss Amos' little smile, but this generally stoic disposition is actually relief to the alternative super upset and uncomfortable attitude. It breaks my heart to see him this way. As I talked about before, I really just miss my bouncing little boy. However, if he can win this war, then one day he will be back to his natural tendency to hoot, holler, and squawk at his dear old dad in excitement at the adventures of the day. I look forward to that, and keep it close to the vest for motivation.

^As I return to working night shifts at the airport, it is hard to be away from him knowing that he is suffering. Strangely, the work is a welcomed distraction for me, but as the sun sets I can't help but get nostalgic for the past when he was such a happy little boy. I believe in the photographer's metaphor we often use in shooting skiing as sunset and sunrise being the "magic hours". They have a way of not only offering up the best photographs, but the best chance at perspective and reflection through beauty in life in general. Even while hard at work on the ramps and taxiways its significance does not fall lightly upon me. This whole ordeal has given me a huge dose in perspective as well as life's lessons. I don't think Christine or I will ever be the same, but I also don't think that has to be a bad thing either. Amos has been a blessing to us everyday of his life. No matter the outcome of his ordeal we have learned, grown, and been enriched by him by unmeasurable leaps and bounds. He will always be the sunset, the sunrise, the "magic hour" of our lives whether he lives here on earth for a hundred years or only one.

A Path Not To Take Does Give Some Direction

We have now indeed received some news from Dr. Shimada and Dr. Parum from Los Angeles. These two men are the foremost experts in the fields of Neuroblastoma and Sarcoma, respectively. Although the reports feel like good news, they still do not give us a definitive answer. I had reported that Undifferentiated Neuroblastoma was the leading suspect, but Dr. Shimada has decided that he does not think that Amos is suffering from a Neuroblastoma. Also, Dr. Parum does not suspect Sarcoma. So this does not give us a diagnosis, but it does seem to tell us that those are not the paths to be taken. To Christine and I this feels like positive news because Neuroblastoma was our least desirable diagnosis as far as cancers go. Now we can concentrate on focusing more on really rare forms of Leukemia and Lymphoma, plus the very outside chance that he has a non-malignant situation. Although, pathology here feels pretty confident that his tumors do show malignancy, just the type and form continue to evade diagnosis.

^On the brighter side, Amos is still progressing on eating, and the doctors are keeping his liver function under control with steroid treatments of what I finally can pronounce as, Dexamethasone. This steroid is keeping his bilirubin count down around 3, which is still above normal. However, a count of 3 is within the parameters of controllable and still buys us time to continue the exhaustive search of the most rare forms of cancer that are known. We had always hoped that our boy would grow up to be different and significant, but we really don't want to have a brand new form of cancer named after him.

^I'd also like to add that the nursing staff here has been particularly kind and diligent in helping us maintain Amos' comfort and keeping a close eye on his condition throughout our stay. These people have a thankless job that I can only imagine weighs on their minds as they are privy to witnessing horrible situations on a day to day basis. So although we still have not arrived at a diagnosis even going back and forth from leading suspects, Christine and I still maintain the upmost confidence in this staff. Now we are moving forward with not so much a path to treatment just yet, but in knowing which paths we do not want to take in Neuroblastoma or Sarcoma. The saga continues.

The Waiting Game

The waiting game continues. There is not a lot of fresh news to report on Amos' battle with whatever ails him. Since the doctors have gotten his liver more under control, and the urgency has subsided to a certain degree while we are able to wait for more definitive answers, and for Dr. Shimada to weigh in from Los Angeles.

^Amos did not appreciate his feeding tube one bit. It was a real struggle to try to keep it taped down to his face so that he would not pull it out, and eventually he emerged the victor. He grabbed a hold of that thing and yanked a good twelve inches of it out his nose from down in his stomach. Thankfully, it seems he retained the good talk he and I, dear old Dad, had about cause and effect, and he has started eating much better on his own. He is taking formula with regularity, and he is even letting Mom feed him real baby food too. This is a real relief to Mom and I because the doctors are allowing us to forego the feeding tube as long as he stays on top of eating on his own. 

^Pictured above, Amos and Mom catch a nap as we are going on week number two living in the hospital room. This morning both Christine and I kind of started to feel the effects of the longer term grind of it all. The initial emotions are subsiding a bit, and even though we are still at the beginning of all this the nature of just how long and how much our lives are changing as a result is starting to become a reality.    

^Amos finds comfort in reading books with Mom and watching his favorite monkey, Curious George. Mom seems just as into it as Amos is I think. Christine is the rock for Amos. Amos is a total Momma's boy, and she is rising to the task. She can comfort him like nothing else. Although I am good for fun when he wants to play, it is all about Mom. I am doing my best to be the best "GoFer" I can be for him and Christine, but it has been tough for me because Amos just can't do the things that he and I were really growing into enjoying together. Before he became sick Amos and I were really getting a lot of time together during Christine's work day because I work nights and could spend a lot of days with him. Since he had grown out of being a newborn we were just really starting to get a lot of play time and going on hikes in the mountains together with our best buddy, Murphy, our golden retriever. Last night it was really weighing on me that I really just miss my little boy. He was really starting to come into his own and growing into the boy I had envisioned he would be. He was beginning to love hanging with me and Murphy in the backyard, in the garage, and on hikes in his baby boy backpack in the mountains. He was coming into his own. Now he has shut down somewhat. He is not the bouncing happy boy squawking at Dad from the backpack and yanking on my sunglasses as we venture through the creeks, cliffs, and pathways of the mountains. He needs his Mom in a big way these days and Dad's role is just not as useful to him in his current state. I am doing my best to simply be the best go-to guy for Christine in helping with all the tasks she needs to keep him comfortable. I can't hold him as much, and he is very stoic even when he does feel like playing with his toys and Dad. So for now I just focus on getting down to the business of support, and I simply try to keep an eye to the future when he is back to the bouncing boy who hoots and hollers from behind me while tugging on my sunglasses from in his favorite spot riding in his backpack in the warm sunshine of bluebird mornings in the hills. I take solace that it will be all that much more special when we finally get back to our backyard play time, our best buddy Murphy, and our timeless adventures in the mountains all over again.

Hold the Phone

Okay, this is gonna be an update that might further make this whole ordeal seem more confusing then I may be able to explain away. However, here goes my best effort. Amos was scheduled to begin some preliminary chemo therapy today, but just before the scheduling was set to begin some new developments caused the doctors to decide to "hold the phone". The sense of urgency that was created by the malfunctioning of his liver has somewhat subsided. This is due to a heavy dose of a steroid that I am not even going to try to name because it has more syllables then I think I can even count. The doctor here referred to this steroid dose as a "sledge hammer" versus the "holy water sprinkle" that we were using to try to shrink the lymphatic tumors that were obstructing the bile duct of his liver. This is measured by what is called a Bilirubin count. His count was alarmingly high at 10, which is what sounded the alarms to begin some read and react style treatments even though the exact diagnosis was still not quite definitive. However, after the sledge hammer came out, a metaphor I love as a tradesmen, it dramatically dropped to 5. This is still high, but a great sign which warrants another dose, and buys the doctors time to take on more due diligence to get to the root of the problem.

^This also gives Amos some time to further recover from the surgery, and now build up his nourishment and strength for his battles. In the photo above you can notice a feeding tube that was installed to help with his nourishment because Amos just wasn't interested in eating as much as we would have liked. In buying ourselves a little more time it has allowed the doctors to take more extreme action, which includes involving the "grandfather of Neuroblastoma" one Dr. Shimada in Los Angeles, California. Dr. Shimada has agreed to look at Amos' case, and was consulted because further detailed testing came back today as negative for a true and clean cut Undifferentiated Neuroblastoma despite other indicators that seemed to indicate it as such. In addition to Dr. Shimada is another leading expert in Sarcoma that I think was one Dr. Parum, but don't quote me on the accuracy of his name, who has also agreed to review Amos' case. All the while we can work on getting Amos' Bilirubin count down and his strength up. So while this may all seem really dramatic I want to reiterate again that Christine and I are in no way frustrated or upset with the staff here because they have all been so transparent and forthcoming with every detail of the investigation. Reading updates here does not allow one to see the body language and the faces of these very human people who are going to war with us on this. When these doctors come in to talk to us I can see the desire and concern they are wearing on their sleeves as they labor through Amos' case. I see there fortitude and determination, as well as their uneasiness at not being able to give us the answers that we want to hear. I have upmost faith and trust in these people to do their absolute best for our little boy. We can see it there faces every day, and it gives us great comfort.  

^As we patiently await for the best doctors in the country to go to work on Amos' situation we continue to be overwhelmed at our support system. Christine and I have always known that we have great friends and family, but the extent that folks are coming out of the wood work to support us unreal. Pictured above is Jodie Brunson. Jodie is Amos' babysitter who has cared for him day in and day out before all of this started, and she was paramount in helping us notice irregularities in his behavior. Christine told me that when she was looking for someone to help us care for Amos each day that all she really wanted to find was someone who would love him like he was one of their own. The day she came home from meeting with Jodie I could tell by her reactions that Jodie was her girl. Jodie has truly been a blessing to us, and Amos absolutely adores her and her family. Her husband, Clint, has proved to be a genuine friend, and Amos has also seemingly fallen in love with their children as well as Jodie. Her easy going and caring demeanor is evident to anyone who has been blessed with her acquaintance. In addition to people we never expected to be so wonderful is the support of those that we can often take for granted. My parents just flew back to Wisconsin this morning and their support throughout has been unyielding. Christine's mother has been with us and so wonderful from the day Amos came home with us. My big brother, Tyler, has always been my rock solid partner from the day I came into this world, and my love for him is evidenced by a classic story my mother tells of me chasing the school bus for nearly a block down the road on his first day of kindergarten crying for it to bring back my brother. I can hear his pain in his voice every time I call him to deliver news of Amos' situation. Tyler's wife, Nicole, is a steadfast pragmatist that is the whole wheat bread to my emotional jam that has always kept me, and life in general, in check as she flat out handles business. All the while through this whole roller coaster she has been carrying Amos' first cousin, and she is just a few months away from her own delivery date. Christine's father, Phil, and brother, AJ, are ardent examples of heroic firemen as they have been immovable rocks of support to both of us. It is easy to take those closest to us for granted because they are always ever present fixtures in our lives. I never want that to happen. My most trusted backcountry ski partner and dear friend, Ben Geiger, and his wife Heather came to visit with their beautiful young children, Monroe and Laird. Amos was so excited to see some other young kids that he was fixated on their bright little smiling faces. Christine and I's friends Chris and Cassandra Holcomb brought us dinner. One of my skiing mentors Lorenzo Worster sent over his friend Vicki Wilkins who works here at the hospital to support and translate medical speak for us. Our dear friend Liz Charlat came to visit. My cousin and shining example of a cancer fighter, Shelley, and her husband Marc Weise have been invaluable confidants. My dear friend Wes Knopfel visited with the son of he and his wife Tomo, Sebastian. I really could just go on and on with name, after name, after name of wonderful people who have stepped forward in our hour of need. Not withholding the coworkers of both Christine and I at Delta Airlines and Delliote & Touche who have been so very understanding and supportive as well. I really never will really be able to give enough thanks to all the beautiful people we are so blessed to have behind us. I will live the rest of my life trying to pay all this love forward and will never be able to come close to being able to repay the indebtedness of the love given to us.

So in conclusion of this long winded post, all I can say is that not only are we privy to one of the top hospitals and staff in the country, but we now literally have the greatest doctoral minds alive working for Amos. Not to mention what is proving to be the greatest and most overwhelming support system that I have ever seen or even imagined could be behind Christine and I and our wonderful little warrior, our beautiful little boy… Amos Michael Robinson.

Bittersweet Answers

As test results begin to trickle in from the Pathology department here at Primary Children's Hospital regarding Amos' condition it is proving to be a bitter pill to swallow. As I explained in previous posts, the more common culprits where getting ruled out in the search and more rare possibilities were starting to become more plausible. Today the lead Oncologist came in to deliver his latest findings and it was very hard news to take. The leading suspect now appears to be a very rare form of Neuroblastoma called, Undifferentiated Neuroblastoma. In doing my best to understand the genius speak coming from the doctor's mouth, and some later translation from our nurse, it goes something like this: a typical Neuroblastoma is a more stand-alone tumor made of mature malignant cells that are more easily identifiable. Amos on the other hand has a number of lymphatic tumors that are made of relatively immature malignant cells that do not lend themselves to the typical indicators that doctors use to identify cancers. Hence, why the diagnosis has been so ellusive. That said, the current diagnosis, although much more definitive then anything else they have been chasing, is still not a complete diagnosis just yet. However, it is a clear enough picture to begin chemo therapy treatment tomorrow for him. The doctors have decided to go ahead with one of the three possible chemo drugs that will make up his "chemo cocktail", for lack of a better example, that is a more broad based treatment for the still possible forms that could become more clear with more test results and his reactions to the initial chemo therapy treatments. Rare forms of Sarcoma and Lymphoma are still possibilities, but as the doctor put it, "…the time has come to bite the bullet and begin some treatments and Undifferentiated Neuroblastoma is the most likely suspect." 

^Since Amos was born we noticed that he has rather large feet. We have attested this to taking after the rather large footprint of his Uncle AJ. One of many traits we hope Amos retains from him. Now it seems a fitting metaphor as his gears up to kick Cancer's ass. Pardon my vulgarity, but I am a Wisco-kid with deep tradesmen roots, and that is just how we talk sometimes. Tomorrow Amos begins to battle the culprit. Our little samurai warrior has been given a weapon to fight, and tomorrow the battle will begin.    

^We have been very fortunate that a good friend of ours here, Jenni Gudmundson, has a friend in the surgical team here at the hospital. Gary Jones has been so kind to not only schedule Amos' biopsy surgery to our liking, but also be by his side throughout that procedure and visit with us on a seemingly daily basis. He also comes with key suggestions on what to order from the cafeteria as well as what to avoid. Christine and I are happy to call him a friend of ours now in our own right, and I look forward to taking him to dinner one day with Amos in tow when this is all over. I cannot speak enough to the comfort that he has given us to have an "inside man" here with us.

^We have always suspected that our little boy was a talented youngster, but we did not know that included a balancing act to steadily perch toys on his head. His Grandpa Mike claims to have the skill of balancing many teacups on his head, and uses the trick often to try to impress young kids he encounters. Anyone who knows him surely knows that he is mostly all talk, but the efforts each time he starts putting things on his head is certainly endearing and the kids do seem to get a kick out of it every time. I guess the expression, "the apple doesn't fall far from the tree", is applicable yet again. Plus the picture is just too adorable not to share here. 

^Although the diagnosis is by far not the rosy one we had hoped for, Christine and I were preparing ourselves to be ready for such news. In his sleep today his little fist was clenched. I thought it was too cute, and another fitting metaphor for the coming fight. After I snapped the photo the luminous glow behind his little sleeping head also seemed like a sign that I should take as a good one, and perhaps one of the divinity of all the myriads of "thoughts and prayers" and the vast prayer chains that all of our beloved friends and families are sending his way. So thanks again to everyone that has come to our aid and support in all the various forms it has come. It all means so much to Christine and I, and we are certain the Amos is being touched by every last drop of it. 

In closing this post I offer up what I am going to come to call Amos' fight song. The boss man at Telemark Skier Magazine, my very dear friend, and front man in the punk rock band the Riva Rebels, Josh Madsen, dedicated this one to Amos at one of his shows on his latest summer tour. Again, I will disclaimer it for a little vulgarity, but as I explained before, it is fitting in my nature, and his use of the "F" word at the beginning is something I rather support considering our current situation. I am an ardent music lover of many genres, and this one touched me rather deeply. It resonated not only because the dedication was offered up by my good friend, the lyrical message of family and loyalty, but also because the punk flare seems to be in lockstep with the aggressive stance we are going to take in forging ahead into the fight of our lives. 

10-Months Old & Old Dear Friends

The hunt is still on for the diagnosis to Amos' ailments as I have explained in detail in previous posts here. Today was not too eventful with the exception of some interruption of his liver functions due to the increased lymph node pressure around his pancreas putting stress on the bile duct and thus inhibiting the liver from doing it's job properly. It gave us some pause, but does not seem to be anything incredibly urgent at this time. He will be receiving some steroids to hopefully reduce the pressure of the lymph nodes impeding upon his pancreas giving some relief to his liver.

^On the brighter side, our little warrior reached 10-months old today. Despite his awful circumstance we tried our best to make it a happy day for him. Every month we take a picture of him with this stuffed puppy his Nonni bought him to mark his growth. We couldn't quite get a smile out of him. However, he did play a little today, and also was willing to take a little bit of formula for us. Not exactly birthday cake, but it was a big deal to us.  

^An incredible surprise was to have an old and dear friend to Christine and I show up at our hospital room door all the way from Chicago. Karl Anderson and I fist met on the soccer field our freshman year of high school in Wilmot, Wisconsin. I was by no means a soccer player, but thought I would try out to get stronger for the coming basketball season, and hopefully make some new friends. Although I was five foot nothing and a hundred pounds soaking wet, I made the team because despite my size I did have some speed and athleticism. It also helped that it was the first year of the program and soccer is not exactly a big time sport where we grew up in southeastern Wisconsin. That being said I was stoked when the best player on the field wanted to hang out with me. I was eager to make a new friend as well as hopefully learn to play the game from him. By senior year he had indeed taught me to play to a level that I could consider myself an actual soccer player. I will always remember the day that Karl's dad told me so. Karl and I were varsity captains together, and he was the tightest of friends to Christine and I by then. Over the years since then busy lives and different paths led us toward relatively different lives as I became a ski pro and married to Christine in the town Karl and I first ski bummed in as high school seniors after our partnership in an Etrade stock account made us enough cash to do our first ski bum road trip out west to Ogden, Utah. We also disguised it as a "college visit", which is where I ended up getting a degree in finance following further down our Etrade stock account path. Karl became a Pastor in Illinois and blew our minds when Christine and I attended his wedding to his lovely wife, Andrea, and we first saw him in action in front of a crowd of the devout. Christine and I were touched at his presence at the hospital door. It had been since Christine and I's wedding years ago now since Karl and I had a real conversation in person. I had often recently wondered if we'd ever be able to be as tight as we once were. However, as he showed up in my darkest hour and we sat down to talk about it, all those thoughts quickly faded. We settled in, and it was like senior year all over again. So today when "spiritual services" came by the room to ask if we had any clergy come visit with us it made me so proud to say, "Yes, in fact our Pastor was here the last two days."

^While I am on the subject of good friends supporting Amos, the display of love and support from all of our friends and family has been absolutely overwhelming. I will never be able to thank all of them enough. Pictured above is a friend I made in my freshman year at the university that Karl and I visited on that senior year ski bum road trip to Weber State University. Haley Soto and her two beautiful daughters came by to visit Amos and brought us some good home cooking. Haley has brought us dinner a couple times this week already, and like everyone else I am unsure I will ever really get to display my gratitude properly to her either. My buddy Aaron Hillman also brought us some of our favorite steak sandwiches from Red Rock here in Salt Lake City. He and Haley both even smuggled a little micro brew into the hospital for us against the rules, but I don't think hospital security will be reading this site anyway.

^On a more personal note, I was supposed to be standing next to one of my oldest and best life-long friends from all the way back to elementary school days as he married the love of his life. It breaks my heart not to be there with him and our other dearest life-long friends that are like brothers to me for the celebration. Babak Raymond Yousefian and Catherine Lewis tied the knot today, and although I couldn't be there I was so pleased to be able to watch the wedding streamed live from the hospital room. He knows how much I love him, and I know how much he loves Christine and I and our boy, Amos. It was one of my more difficult conversations to call him and tell him about Amos, and tell him that I would not be able to be in his wedding party as planned. It will remain a great regret of mine, but I will just have to make up for it with a quality boys trip after Amos wins his war.

^Lastly, I want to thank another college friend, Karie Warfield, who thought ahead for Christine and I in setting up a donation site for Amos that is the widget that is now displayed on the top right side of this website. Honestly, the financial consequences of Amos' fight had not even really occurred to me yet. However, I am so thankful that it did to her, and that she took the time to set this up for us. I have never been one to ask for help, especially of financial origin. Just like I mentioned before, and will probably mention a hundred times more, I will never be able to thank her properly either. So in closing this post that had less to do with updates on Amos' diagnosis or treatments, and more to do with trying to make some kind of effort to thank all the wonderful people in our lives that are supporting our little boy, the only thing I can say is thank you, every last one of you. From Facebook posts, to visits, to phone calls, and food deliveries… thank you... thank you so very much. 

The Hunt Continues and Expands

As much as Christine and I are anxious to have the doctors here arrive at a definitive diagnosis for Amos, we are respecting the process. The nature of this practice of medicine is not as certain as episodes of "House" or "Grey's Anatomy" would lead people to believe. It is a painstaking process of elimination and comparing and contrasting to known ailments. There are a few things that we know for certain. First, Amos has abnormal cells in his blood and bone marrow. Second, he has a number of tumors in his neck, chest, and abdomen. Third, something is restricting his production of mature red blood cells and platelets. On the bright side, his bone scan yesterday showed that there are not any tumors in his bones, which was a legitimate fear. A recent test result that was searching for Lymphoma came back as a negative result for the most common form, which does not necessarily rule out a more rare form. However, this also does not point us in any certain direction other then eliminating that particularly common form of Lymphoma. I know that this can seem frustrating, but we are starting to garner a greater understanding for just how laborious this process that his doctors are undertaking really is. As we move through the most common forms of Leukemia, Neuroblastoma, and Lymphoma the hunt for a certain diagnosis now is broadening to include illnesses that include non-malignant tumor causing syndromes and diseases as well. While this can seem comforting to hear, we are sure not to get our hopes up too much. The word "cancer" comes with a stigma and a fear that when the discussion of a possibility of non-cancerous situation arises it can feel like better news, but even non-malignant ailments can be just as dangerous as cancers. So the hunt continues, and still we wait...

^Some more good news is that as he recovers from his surgery and begins eating there is a good chance that they will let us bring him home while we wait. With the help of the diligent care of a home healthcare nursing company we could wait out the diagnosis in the comfort of our own home until more results come in this week. To Christine and I, who've been sleeping on a pull-out hospital twin bed for the last week, that sounds like a little slice of heaven. We are also convinced that our golden retriever, Murphy, has magic healing power as well, wink wink. In the photo above, Christine consoles Amos, and you can see his fresh little belly scar and his broviac central line. 

^"Rest up, buddy. Soon enough we will get answers, and you will need your rest for the battle against whatever it is that is ailing you." -Daddy.

Looking for a Diagnosis

Amos Michael Robinson was born on September 19th, 2013 to the joyous parents, J.T. and Christine Robinson. I am J.T. I have started this website to keep family and friends up to date on his journey to recovery from cancer. 

My wife, Christine and I noticed that he was becoming uncomfortable at night and lethargic during the day. His little appetite began to shrink and we noticed some tiny red dots, known as petechiae, had formed on his chest. We decided to take him to see his pediatrician, and the whole situation escalated quickly when some blood work indicated some abnormal cells in his blood stream. Amos was promptly checked into Primary Children's Hospital in Salt Lake City near our home in Ogden, Utah. It was not long before we were informed that the culprit to his ailments pointed towards the dreaded word that no parent ever wants to hear, cancer.

^Recently, Christine and I visited Kyoto, Japan where we bought Amos this adorable little Samurai outfit, and its significance now has taken on a whole new meaning as we have now come to call him our little samurai warrior fighting his own personal war against cancer.

^In the hospital our brave little man had endured pokes, prods, and tests, upon tests, upon tests. The fabulous staff at Primary Children's have been working diligently to arrive at a definitive diagnosis for the type and form of cancer that is ravaging my poor little boy's tiny little body. He has remained in relatively good spirits throughout the ordeal. That is more then I can say for myself. As any new parent can imagine the news felt like some kind of terrible nightmare to Christine and I. We cried, sobbed, and our minds ran wild with awful thoughts as all of our grand visions of little league baseball, tiny little soccer cleats and shin guards seemed to fade before our very eyes. As we began to get our heads wrapped around the reality of the situation, we began to settle in for the fight that was ahead. Hours melted into days, and then days into our first week living in a small hospital room of the cancer wing on the fourth floor of the hospital. Still no definitive diagnosis. A CT scan of his little body showed a variety of tumors in his body from his neck, down his spine, and into his abdomen. The doctors performed a surgery to go into his belly and biopsy one of the tumors to try to figure out exactly what kind of cancer Amos is fighting.

^Amos came through the surgery very well. With a low blood platelet count there was a real fear of him bleeding out during the surgery, but no such events occurred. He was returned to his room where his mom and I were able to be with him, and help keep him comfortable as he recovered. Now he has his first scar before he ever said his first words or took his first steps. A broviac central line was implanted into a vessel above his heart to administer treatments including the eventual chemo therapy that he will most likely require to attack the cancer cells. In the photo above, Amos is resting soundly after the procedure, and his broviac line is visible on his tiny little chest. As the doctors labor painstakingly to determine what is ravaging his young body the leading suspects have changed from Leukemia, to Neuroblastoma, to Lymphoma, and then yet again to the unknown. So as the doctors continue to chase down lead after lead under microscopes and test results, we wait...