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.
