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.
