Open Letter to a Cord Donor

Amos has just come up on his first "bone marrow birthday". That basically means that a year ago Amos received the gift of life from a donor. In our particular situation, that was a woman that decided to donate the umbilical cord that connected her and her newborn son. My wife, Christine, recently sat down and wrote this open letter to her while we sat in a surgery waiting room as Amos was undergoing a procedure to test his new bone marrow now as part of the battery of tests that are included in his "one-year work-up" to make sure everything looks good, he is still in remission, and still going strong:

To the mother who helped save my son’s life:

You don’t know me, and for that matter, I don’t know you. From what I understand, we’ll never know each other. But, that doesn’t mean I can’t write this open letter of thanks to you in hopes that someday it makes its way to you, or to the many other mothers that have done the same thing as you. You might be wondering what you did, so let me start from the beginning…

My husband and I took our son, Amos, to the doctor on July 11, 2014. We were sent directly to Primary Children’s Medical Center in Salt Lake City and were admitted that night. Throughout the course of the next two weeks, our son underwent numerous tests to determine what was going on. On July 29, 2014, our then 10-month old son was diagnosed with Acute Monoblastic Leukemia and started his first round of chemo that same day. Shortly after he recovered from his first round of chemo, the doctors determined he would need a bone marrow transplant.

Fast forward through rounds two and three of chemo and that brings us to Thanksgiving Day 2014. We were all prepared to head back to the hospital on Black Friday to begin the transplant process. Literally, as we were sitting down for Thanksgiving dinner, my cell phone rang. It was the bone marrow doctor calling. My heart sank – a call this late in the game could not be good. He said that our live donor had been disqualified. We could qualify another live donor (there were 28 perfect matches in the donor bank), but doing so would require another round of chemo due to the time it takes to qualify donors.

Here’s where you come in. The doctor told us that there was an umbilical cord unit available that was a nine out of ten match. Ordinarily, they would be thrilled with a live donor that was a nine out of ten match. And, because it was immediately available, Amos would not have to undergo an additional round of chemo while a live donor was being qualified. As the doctor suggested, we proceeded with the umbilical cord unit. On December 12, 2014, a year ago today, Amos received his bone marrow transplant from the stem cells of the umbilical cord you donated after the birth of your son in 2008.

On January 11, 2015, the transplant engrafted. Now, it is your son’s blood that runs through my son’s veins. I’m not sure how you knew about umbilical cord donation, especially seven years ago, but I’m so thankful you did. I had no idea it was something that could be done until my son needed help. What a blessing your foresight has had on our family. The transplant road has been a difficult one. We have been to that place where one fully realizes that tomorrow is not guaranteed. It is a very scary place. But, it makes you thankful for each moment and tomorrow that you do have.

Every day he’s turning more and more into a typical toddler, and we revel in it all. From his silly antics to his animated facial expressions. We find ourselves in tears often, tears of joy, at the littlest things – like when my husband sneezed the other day and Amos replied “bless you Dada”. We realize how lucky we are to have one more tomorrow. One more chance to see him smile and watch him grow. You are a big part of that.

We will be forever grateful to you. While there was no guarantee that the umbilical cord you donated was ever going to be used, please know that it was used to save the life of a wonderful little boy. And we will do the best we can to make the most of it.

One forever grateful umbilical cord stem cell recipient’s mother,

Christine

^Christine and Amos snuggling at home. #HappyHealthyAmos

Just a Kid

It has been a few months now since Amos' doctors had cleared him to be able to socialize and play with other kids. It has also been a rather steep learning curve for him as well. At first, he did not know what to do. At first, he would throw a fit if anyone would get close to him, or talk to him. Then in time he got a little better. He would not freak out as much, but rather he would literally stick both index fingers into his nose and lay down flat on the ground. He would cautiously watch other kids at the playground from a distance, but avoid interaction. Slowly, but surely, he began to come around. My wife Christine's dear friend from our hometown, Abbey Gerhing, came into town with her 4-year old girl, Avery. By the time they arrived Amos was starting to warm up to new people a little more. Amos had met Abbey and Avery before when he was younger, but I am not sure he was able to remember them. However, with a little warm-up time he had taken to them like they'd been around forever. 

^Before too long Avery and Amos were playing together and sharing toys like the best of friends. Maybe the vibes from their momma's lifelong friendship rubbed off on them some, but either way it was heartwarming to see him playing with her. I could literally see the anxieties melting with each new toy he pulled out for her.

^Watching him lead Abbey, or "Auntie Bibi" as we've come to call her, around the woods and over this bridge was like a dream come true. It seems we have milestones like this nearly every week now since we have left the hospital. Amos is improving so fast, and learning with equal speed. Amos would proclaim, "Bibi walk!", and he would reach out for her. Abbey and Christine go way back to elementary school days, and I have known them both as the best of friends nearly as long. I have always loved all of Christine's girlfriends from the hometown, and it has always been a dream of ours that our kids and their kids would grow up to be great friends as well. Watching Amos fall in love with Abbey and Avery just like his mom and I was truly a gift. When Amos was really sick in the deepest days of his cancer fight I would whisper to him in his comatose state all kinds of stories about all the people from our hometown just like Abbey and Avery. I would tell him about the caliber of people they all are and how much he was going to love them just like his mom and I do. I told him about all the fun we'd had growing up and how if he would just keep on fighting that one day he too would get the chance to meet them all, make his own stories, and fall in love with all of them just like us. Watching him make these memories with them and warm up to them just like we had hoped he would was just as glorious as I had made it out to be when I was whispering the grandiose stories to him in the intensive care unit as he lay motionless with a machine breathing for him. 

^Then there was this. I can't really even try to explain how my heart smiles when I look at this picture. Just a kid. A happy kid excited for Halloween, and ready to go trick-or-treating with his best buddy, Murphy. Pat Sajack and Vanna White! Christine is an ardent "Wheel Watcher" and in the hospital Amos and her developed a habit of watching the Wheel of Fortune every night it was on. Amos grew to love the show as much as his Momma does. He'd even clap from the hospital crib when someone would solve a puzzle on the show. When it came time for Halloween it just made sense that he'd dress up as his favorite television personality just like a lot of kids do. For most kids though that would be some kind of cartoon character or something, but seeing as though Amos' life thus far has been anything but normal it would make sense that his favorite television show would follow suit. Also, after we came up with the idea of Amos and Murphy as Pat and Vanna the thought of it was just way to damn cute not to go for it. Christine got creative, and made the costumes happen. I must say it was just as cute as we had envisioned it, and maybe even more so when he had as much fun with it as he did. Running around with all the kids trick-or-treating like he was just another one of them made it even better.

^Like any kid who has always wanted know if it is possible to ride the dog, Amos gave it a try. Of course, Murphy let him know rather quickly that the idea wasn't going to work out, but in her usual sweet manner it was with an attack of face licks that she gave him that message. He simply thought it was a fun way to get her to lick him, which, like a lot of kids, is also one of his favorite things to do with her. She really is amazing with him. She is so gentle and patient that sometimes I feel like I could learn a bit of that calm collectedness from her.

^In my work life I had a really busy stretch come on with a Wilderness First Responder course I needed to take for my ski career advancement, as well as some Delta double shifts on either end of the intense medical and rescue course. I had not seen him for nearly a full week, and then the following week he was going to be traveling back to Wisconsin with Christine for the holidays as well. So I really only had a little bit of time with him between the two long stretches of not seeing him for a week at a time. It was really kind of tough for me, but that just meant I had to really make our time count while I had it. As Amos would have it we read a lot of books. Christine snuck these pictures when we weren't paying attention...

^…or just flat out napping.

^However, before I knew it the time had come for Amos and Christine to leave. In this picture he was "calling Nonni" on his play phone to let her know he was coming. Amos and Christine were going to be heading home to Wisconsin to visit our families, and I had to stay back to handle some remodel work I had to do in the house while they were going to be gone. I will meet them back there after I get done with the remodel work and also put in my Delta shifts for the week. I was sad to see them go again, but I was so excited for Amos to be able to travel again. I had also whispered tales of all the places we would take him in those same whispered breaths in the intensive care unit. I had told him all about airplanes and how they would take us all over this world. I dreamt of the day I would add him to the flight benefit list perk that comes with my night job with Delta airlines. When Christine pulled up the travel website that day, we saw his name listed, and we booked him into his first airplane seat all his own. I was sad that I would not be able to be in the seat next to him with Christine. However, Christine assured me that she'd send me a picture of the little guy all snuggled into his seat on the early morning flight with his little feet wrapped up in footy pajamas barely hanging off the end of his airplane seat. I yearned to be able to experience the flight with them. I wanted to be a part of that milestone. I wanted to see him looking out the windows watching the workers just like I always see all the other regular kids doing as I work just outside those very windows. I just want to be with him all the time now cherishing all these moments of him doing the things that all regular kids get to do. I want to hang on to that appreciation that we have gained now living through the hard times that comes with a cancer fight. I don't ever want to forget how good it feels to see him do all these things that most parents are fortunate to take for granted. I don't ever want to lose that gratitude, that blessing, that gift to have my little superhero shed his metaphorical cape of survivorship and finally get to be... just a kid.

Milestone, One I Dreamed About

**I'd like to make note that this post was started a few weeks ago at which time the charger for my laptop literally burned up. If not for my lovely wife braving the Apple store for me, it may have taken me even longer to get my laptop back online. That said, this hike took place a while ago, but its significance still resonates with me every time we go up.** 

Before Amos was born a good friend of mine talked to me about what it is like having a baby and how it is tough for guys like he and I, ardent outdoorsmen, because there is not a whole lot that we can do with him until he gets a little bigger and less fragile. He said, "Get one of those kid carrier backpacks and take him hiking as soon as he can. It will save your mindset, and the baby will love it too." Amos was born and I completely understood what he meant. When Amos was about six-months old we got him the backpack. Every chance I could I loaded him up in the pack to hit the trails, and we both loved it. He would giggle and coo all the way uphill and back. I was a beaming daddy. I had all kinds of visions of the adventures we'd be able to take him on. Then soon after he was diagnosed with Leukemia, and everything stopped. Everything. Those visions of family outdoor adventures shattered like glass. While he was in the hospital fighting for his life I would daydream of the day he would be on my back giggling and soaking up the sunshine on the trails in the mountains again. In those darkest days it gave me something to look to for hope.

^We received the all clear to take Amos up on the trails again, and I immediately began getting all the gear set the night before like I would as a skier amped and preparing for a big trip. I laid everything out to make sure I had it all, and was ready to go right away in the morning.

^The next morning I loaded up Amos and our favorite four-legged hiking partner, Murphy, and we were off.

^All loaded up and ready to go in the lot, and he was a bit uneasy. As much as I'd hoped he would be all fired up like he would get when we first started hiking together over a year ago, it made sense that he was apprehensive after a whole year in and out of the hospital. He was unsure, and I knew that meant I would be starting all over again getting him excited about hiking with me. With a pocket full of Goldfish crackers, juice, and a binky I was ready. 

^He remained uneasy for a while up the first switchbacks of the trail, but to my delight it did not take long before he came back around in lockstep with my nostalgia. Soon enough he was hollering and fist pumping like the old days. 

^Strong Creek Canyon was our destination as it is a short, mellow, and shady trail along Strong Creek where Murphy can get plenty of drinks throughout and Amos can play in the creek on rests. Passers by probably wondered at the stream of tears running out from under my sunglasses as I did my best to hide it from them, but surely I received a few double takes. Whatever, I don't really care about much these days, let alone the opinions of strangers on the backyard trails.

^Strong Creek, strong boy.

^Leaves. For most of us, and even most kids by his age, green leaves on a summer time trail is no big deal. For Amos, on this day, it was mind blowing. As such, watching him lead me around by the index finger from tree to tree,...

^… across bridges, and over rocks was mind blowing for me. Coming from a lifestyle of the wildest adventures in some of the most remote mountain ranges of the planet, and here I was in the same kind of awe at the sight of an almost-two-year-old boy seeing the leaves on the trees and hearing the babbling of the brook like it was his first time all over again. There was a time when I was in the shadows of uncertainty as to whether I would ever see this day with him again. I clung to the thought of it for hope as he lay critically bloated and breathless on a ventilator in a pediatric intensive care hospital room. A vision of this day was the distant light I kept telling myself was at the end of the tunnel of his cancer fight even though I could not see it clearly.   

^Looking back over my shoulder at this sight of my smiling bouncing boy giggling and...

^…tugging at my sunglasses straps literally felt like I was being bathed in the warm light that I had placed at the end of this tunnel. If I am honest we are still far from the end of the tunnel just yet, but it seems I have found a section where the top of the tunnel has been blown off and the light is shinning though lighting everything up and growing wildflowers along the side of the track we are on. The feelings are warm and cozy for now so I won't question it or take it for granted because I am too worried about the future and the "what ifs" of a life with a kid fighting Leukemia. Even in remission.

^So today we win. Tomorrow is another day. Who knows what any of our tomorrow's will bring, but today we are happy. So today we will be grateful for even the chance to be happy again. People all over have real problems everyday, serious problems. Others have problems more or less serious then some, and severity is such a relativity that I no longer feel like I can have any perspective on anyone's life. I only know that on this day, on that trail, with this dog, and with this boy pumping his fists in the air while snugly propped up on my back, all is right in our world again at the moment. That is all I ever hoped for in those darkest hours of his cancer battles, and maybe all any of us can really ever hope for in our whole lives. It is how I want to live now, and this tiny little giggly boy who can barely talk or walk taught me that.        

A Year Ago Today

A year ago today. Yes, a year ago today everything changed, forever. The day before was a walk in the park. Literally. We took Amos for a walk in the park along the cool shady Ogden river on a hot July day. The next day he had an appointment with his pediatrician to check out a bunch of mysterious red dots on his body. Now we know to call them, petikiai. A year ago today I was making a sandwich when Christine called from the pediatrician's office to tell me to get myself together because we had to go down to Primary Children's Hospital in Salt Lake City immediately. "It could be nothing, or it could something really serious." She had a dead serious tone coming from the pit of her stomach. It didn't feel like nothing when she pulled in with him in the back of her Jeep and sprung from the driver's seat with an urgency I hadn't seen from her, ever. A year ago today Christine was white knuckled in the passenger's seat as I drove faster then I ever have down interstate I-15 into the city. Anyone who's rode with me knows I am barely a "five-over" kind of guy. I will never forget the doctor's face in the emergency room. He came in and sat down and said, "It looks like some form of Cancer. We are going to get you guys checked into Oncology and go from there. It is needless to say this, but it is going to be a tough road, and for a good year to come even if everything goes well." It felt like the oxygen had been sucked from the room, and straight out of my chest as well. Christine and I simply sat there. She rocked Amos in her arms. He laid calmly and comfortably looking up at her, just an eight-month old baby boy. A year ago today I stepped outside the hospital to try get some air back in my lungs, and try to make some phone calls. A year ago today I knelt on the sidewalk and wept as my first call was placed onto the wind to whatever power runs this show to let it be known, "You can't have him yet. You can't have him yet. You can't have him yet." Then I called my parents.

^A few days later I wrote the worst Facebook post I never thought I would have to. I uploaded a recent picture of Amos in his new Samurai outfit Christine and I had gotten him in Japan just a few weeks earlier on our fist vacation away from him since he was born. Then I typed the word Cancer in the box where Facebook asks, "What's on your mind?" with shaky hands on the keyboard. The warrior metaphor seemed fitting. A year ago today it was just a cute outfit, now it is a symbol of the perseverance of the smallest of warriors. Amos Michael Robinson. Our now nearly two-year old son.

 ^Just a few months ago we brought him home from the hospital, exhausted, but in victory. Even today he still has a long road to go, but the warrior had slain his enemy within and left to go home and heal from his wounds. He stopped breathing on Christmas morning, but now today we all are breathing just a little bit easier, and maybe a bit more deeply, then maybe ever before. I wrote in my notes at some point along the way, "Cancer has made me love people again." Before a year ago today I was upset with myself and all of us as a human race for taking this earth for granted, our wealthy lives for granted, each other for granted, our very existence for granted. That is a whole different rant, but a year ago today I was afforded the gift of witnessing everyone we have ever known come forward to support and love us, and even so many we have never known. A year ago today I had no idea how many people loved us. A year ago today I had no idea how many people loved Amos already. A year ago today I had no idea how deeply I could appreciate all the people in our world, and regain my love and respect for all the people of this whole entire world. Life comes at all of us every day, no matter who we are, or where we are, it comes at us. How we walk through it is up to us, and we all take this walk together.

^Today Amos still has a long way to go, but today he gets to play in the backyard with his best buddy Murphy. Today Amos doesn't have to be poisoned with chemotherapy on a monthly basis. He doesn't have to endure mouth sores, fevers, nausea and excruciating pain. He doesn't have to fight so hard. Today, Amos gets to be a kid. Today, we are so grateful for even just another day with him. 

^The classic food face pictures, the classic first steps, the classic things every kid does every day that now we feel so fortunate to get to experience with him day-to-day. The little things he gets to do every day that a year ago today we might just very well have taken for granted.

^He gets to cuddle with Momma without IV chords attached to a large rack of machines. He gets to snuggle with his puppy Murphy under the living room with a mountain view. He gets to chase Grandma Kay around the house pushing his Mickey chair across the perfectly smooth hardwood floors that his Uncle AJ refinished for him during the hospital stay. He gets to lounge in his play tent chocked-full of cuddly stuffed animals from people who sent him their love from every corner of this wide world.

^He gets rides in a new wagon. He gets to almost be like a regular kid. Almost. As I said, he has a long way to go, but right now, today, he is the #HappyHealthyAmos that we all hoped, prayed, and posted our hearts out with loving messages of kindness and generosity about. His story reached across the wireless world of social media pages and all of our networks of relationships to touch so many people in so many places. He made us take stock. He made us say more "I love you's". He made us give more hugs. He made us all better people, and he was only just barely a year old. Today we are simply more thankful and more appreciative for everything this human life experience provides. Today we are all vastly more humble then we ever were just a year ago today. 

^A year ago today this little golden pup, Murphy, lost her family for a year too. Yesterday, Amos' Uncle AJ had to put down his own dog, Bailey. Today that makes me squeeze Murphy a little tighter, and appreciate her a little more fondly, as I remember that even she too also suffered since a year ago today. Christine and Amos' giggles as Murphy got a turn to ride in the wagon on this day is the greatest gift the miracles of love, a god, and this practice of modern medicine can provide. 

I am literally writing this post from the backyard as Amos plays in his new water table, still careful not to get his broviac line wet, but none-the-less splashing around and giggling along with his Momma and I, his Grandma, and his puppy. A year ago today everything may have changed. Indeed, after a year ago today, nothing will really ever be the same. However, after enduring everything that has happened and now sitting here in our backyard typing and watching him play on this particularly beautiful sunny day, I know that maybe, just maybe, if we keep getting lucky, that every day he has from now on could be even that much better… better then I had ever imagined it could ever be again when I was knelt outside the hospital on that sidewalk and weeping... a year ago today.

Great Appreciation for Business as Usual

It has been some time now since I last posted an update about Amos. In my defense, it is because we have been so busy trying to get back to something that resembles regular life again. It has not been as easy as we had anticipated, but it sure as hell has indeed been as sweet as we thought… and more.

So many people have fallen in love with our little boy through his story. Many of those people have sent us gifts for him throughout the whole ordeal. So many so, that we can barely ever keep up with what has come, and who it was from. Sometimes we receive packages from Amazon that have no return address or any way of knowing who has sent Amos a token of their love and support. The other day we went into the depths of the gifts to pull out just the stuffed animals that people have sent to him. The picture above is like a physical manifestation of all the people surrounding him with love manifested in teddy bears, ninja turtles, Curious Georges, and myriads of other cuddly characters. I wish I could properly thank each and every person, but the task has become monumental. Even if Amazon did include the sender information. 

^Amos and Murphy though are like peas in a pod again. Murphy quietly watches over him, despite Amos' best efforts to run her over with his walker. Murphy retains some minor agility in her old age to dip and dive out of his way. When he wakes up at night crying she often comes to check up, or if the door is closed she simply nestles up to the wall just outside the door to stand guard… or lay guard. He is beginning to interact with her more and more, and she is getting fond of all the food he drops on the floor for her too. 

^To address more of his medical situation, the picture above shows more then meets the eye. Amos is puffy. Our new nickname for him is "Meatbawl"! The puffiness is a result of the steroids he is on to boost the immune system suppressor, cyclosporine, to help fight off a bone marrow transplant condition called Graft Versus Host(GVH). The unibrow you see, and the little peach fuzz mustache and beard that you can't see are also side effects of the cyclosporine. The suppression keeps his immune system in balance so that his body is not attacked by his new immune system being produced by the donor bone marrow. His latest check up tests have shown that his bone marrow is 100% donor marrow, which is great, and that he has no detectable cancer in his blood, which is also great. All signs point to so far, so good. Amos is still a lot of work though. Little kids his age are in general, but then add in a weekly dressing and cap change on his Broviak line that is like a minor surgery with sterile areas, tools, masks, and gloves and the like. Amos gets two intravenous drugs each morning in these cool little pressurized balls as well as a 6-8 different oral medications twice daily. As an immune suppressed boy he has to live by a lot of rules, which in turn means we do as well. Hand washing to the points the skin on your knuckles cracks is not stated quite so explicitly in the 30-page handbook that comes with this life, but it probably should be. Amos has a very specific low-microbial diet which somewhat strangely involves all things processed, packaged, canned, and or frozen. The opposite qualities I have looked for in food up to this point in my life. He can go outside if he wears a mask, but he can't go to the grocery store or restaurants. He can have a visitor if they are not sick, but we can't throw him a party. He misses kids. We miss seeing him with other kids. He plays with himself in the mirror, or with his reflection in the oven. It is hilarious, and kind of sad all at the same time. I can't do any construction on the house and he can't be around any job sites or dusty places. Indoor air quality is a new obsession to add to my OCD. We are officially germaphobes, and for someone like me with the aforementioned OCD that has gives me flashes of myself getting carried away like the tv character Monk navigating a germ-infested world. As a life-long vagabond dirt ball that is a tough adjustment for me. Usually my OCD only manifested to the public when I'd rearrange the refrigerator magnets to line up perfectly at a friend's house party. It is an adjustment, but one that comes along with gaining more and more of a business as usual kind of life. We get to live at our home. He gets to play with Murphy. We get to sleep in our bed. He gets to run around the house in his walker wherever and whenever he wants. All the comforts of home and family with a few extras and parameters indeed, but a whole lot better then Christmas in the PICU with breathing machines keeping him alive. So much better.    

^Winning is tough work. Wears Murhpy out, but she still keeps an eye or an ear to him.

^Amos just wants to party at the Mickey Mouse Clubhouse with all his cartoon Disney pals. Everything has taken on a new kind of "second chance" nostalgia. Most parents aren't snapping pics like it's the first day of kindergarten on an average day watching cartoons on Disney Junior, but most parents don't have to walk the mile that Christine and I have. So I snap away, and cry at the sight of him just playing with his toys in our living room on a sunny spring day. What I used to consider problems are now laughable. What is routine for most parents is like gold to us. I have said before that cancer has made me love people again, and I must also say that it has made me appreciate the littlest of things in life. The things that we all take for granted. I have always been one to try to strive to appreciate life, but this ordeal has taken that desire to a whole new level. Like when I wake up with him sleeping in the middle of the bed between Christine and I, or when he wakes me up with a giggle and a tiny little finger in my nose. Or like the first rays of sunshine beaming through the window warming up the hardwood floor where he plays in front of the large picture window filled with mountain views as the sun breaks over the ridge. I just want to slow down and appreciate all of it. Every last second.

^Like this one...

^… and this one. I will try to keep posting on here from time to time because I know that so many people love this little guy and want to keep up with his progress. Just cut me some slack because I am really busy right now just trying to keep up with this little "Meatbawl" that is getting bigger and bigger really fast, and starting to move pretty fast too.

Christine's Letter to Primary Children's

Amos is at home now and we are all so completely over joyed that we don't really know what to do with ourselves. There is still a long way to go in this for Amos, and I think the possibility of relapse will live in the back of my mind the rest of my life. However, for now, right now, we are good, and that means that we give thanks for everyone and everything that has transpired over the last eight months. That said I want to copy and paste a letter that my wife, Christine, wrote to the beautiful souls in the ICS unit at Primary Children's Hospital in Salt Lake City. Here it is:

Dear ICS nurses, doctors, and staff:

Amos has been home now for about two and a half weeks. It’s been quite the adjustment being home. I no longer have the luxury of relying on the nursing staff to keep on top of meds, help keep Amos entertained, and also help me keep my sanity.  EVS doesn’t come to the house and clean like they did in the hospital room, and no longer can I dial 2FOOD from the phone to get a quick low-microbial meal.  With that being said, this thank you feels overdue.

I remember the first time I had been to Primary Children’s. It was October 9^th, 2013. Amos and I were there for a cardiology appointment. As I attempted to navigate my way to where our appointment was, I remember thinking how I hoped I’d never learn my way around the hospital. I certainly didn’t want to know anyone that worked here. Little did I know that on July 11^th, 2014, Primary Children’s would become our new home for the next eight months. As much as you never wish cancer on any one, let alone your infant child, I will say that I must now renig a little on my earlier thoughts. I am actually blessed to know you.

It was you who carried us through the worst time in our lives. Family and friends have been a tremendous support, but to be in the trenches was an entirely different experience. You face this every day. From the diagnosis, to treatment, to finally getting to ring the bell, and hopefully for us, to a routine set of clinic visits until one day even those are unnecessary. That is what you do, and I have to say that you do an amazing job.

Amos is one lucky little boy. Not every child in his circumstances is fortunate to have a world-class pediatric healthcare facility right in their back yard. You didn’t just heal him, you loved him. From day one, you took him in as your own. Even when you weren’t his assigned nurse or doctor for the day, that didn’t stop you from coming to check on him anyways.

I can’t tell you how thankful I am for how you’ve treated my son, but I also have to say that you’ve been a life saver to my family. Anyone can tell you that this is a hard road. The stress of cancer, chemo, and a bone marrow transplant is overwhelming, all the while trying to keep up with work and daily life. While you were there, loving my son, you were also there for me. You listened, really listened, both about what I thought was going on with Amos as well as how I was feeling. You shared your stories of life’s challenges with me. You taught me that EVERYONE has their story, and there is something to learn from that. I think it is your stories that make you so good at what you do. You told me it was okay to be mad. You validated me when I didn’t want to talk to people with a healthy baby. You cared enough to get to know my family, and cared about them just the same as you did Amos. You saved my marriage.

You were our home away from home, for a long time. We still have a very long road ahead of us, but so far so good. He’s doing well at home (and yes, still wants to party in the middle of the night).

Even though it’s only been a few weeks, I really miss you. You quickly became part of my family, and for many of you, there wasn’t an opportunity to say a proper goodbye. I miss Amos having a variety of playmates other than just Dad, Grandma, and I. We miss seeing him with you and watching you teach him different things while playing with him like his joy was your only concern of the day.

All that said, I hope I never have to see you in that capacity again. I’d much prefer the delight of merely the occasional clinic and social visit to the floor just to check in to make sure everyone is doing okay now that Amos isn’t inpatient anymore.

I can’t begin to say thank you enough to come even remotely close to the love and thanks in my heart for what you’ve done for my family, so I’ll just leave at this: Thank you, really.

Christine Robinson

Wounded Warrior Just Needs Time

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.