Less than 2 weeks have passed since our family was thinking the worst was upon us. It was a few LONG grueling days of waiting for more results, we were extremely relieved that some of our worst fears could be set aside; for the time being anyways (when you live this life, you unfortunately don't get the overjoyed relief that all is truly ok). Now only a week later, we are back to where we feared but not just where we were a week ago but potentially in a worse predicament.
Every aspect of this is so hard. We have to trust our son's life in others abilities and that they make 100% informed decisions based on our kid, his scenario, and his unique path in this life. The medical field is one that I harbor a love/hurt relationship for. Its something that I think anyone in our shoes would be able to relate to. So much of this is about many factors, medical science and what they know about drug interaction and side effects of said drugs, and the teams experiences with other kids in Dylan's situation. The hardest aspect to grasp your thoughts around is that our kid is constantly put up against this "statistic" that each of these other kids are part of. Almost like standing in line at a deli and taking your ticket and waiting for when you're called upon. To the person making your sandwich, you're just another salami and cheese, a turkey hold the mayo, or the guy who will complain no matter what you make for him. I feel like in this process the human side of things can be lost in translation. That our kid is potentially just another person holding a ticket and waiting in line. Maybe the non educated side of me just doesn't get it, maybe being put against others is successful in this situation, and maybe I'm suppose to just let it all go and leave it to "fate". Truth of the matter is, I just can't bring myself to do this, we have to fight for Dylan, we have to do everything in our power to ensure his health and safety. Just the other day the transplant team informed us that we could hold off on Dylan's labs and go back to the standard protocol of labs every other month (when I say standard they mean based on his post transplant state, his labs having come down a tad, and I assume just reviewing Dylan like everyone else who might be in his situation)...what if we listened? How sick would/could Dylan of gotten? Amber and I decided to take it upon ourselves to do what we felt was right for Dylan and do the tests today. The results today are one that bring a lump to my throat, today Dylan's labs are back up and worse than 2 weeks ago and they're the worst we have ever seen them...ever.
Tonight we called Dylan's GI doctor from Kaiser and he's extremely concerned about Dylan and his health. He is someone who speaks to us like family, like a friend, and just another concerned human being for another human being...the world is a better place b/c of Dr. Edward Rich. He advised us to contact Stanford Liver Transplant Team, which we did. The on call doctor said, she would talk to the transplant team in the morning and get back to us when she has some info. So we sit here and wait, we worry, and we wonder if the meal we just ate will be the last one we have at home for awhile...we wonder if Dylan will now need a biopsy of his liver, will he be admitted for IV infusion, is he fighting rejection, is his EBV out of control......and ultimately what is coming next for all of us, and whatever is going on can they fix him and save his liver and stop whatever is going on in his body.
The unknown life we live is hard enough, throw in the overwhelming constant unknown health state of your loved one; whom happens to be a child who hasn't even gotten a chance to enjoy life yet and it weighs on you...it weighs like a ton of bricks and one can't help but let it affect your mental state. I ask myself, what and where did I go wrong in life. Was I that bad of a kid, young adult, a boyfriend, a husband, or a father? What did I do that deserves to have my son suffer and be forced to live this life (isn't the pre-transplant and transplant hurdles enough)? Why can't I just take it all away, why can't life just solely shit on me and not on him or Amber anymore. I would take it all away, even if it meant my existence was to not exist anymore. If I was given the choice to let him live a normal life over my life, I would ask where I sign up and then he can start his new life and end mine.
We are nervous for what is ahead and can't help but fear where this is going. There is no means of understanding any of this or attempting to rationalize the why's. The hardships, the pain, the fear, the life of just hoping that everything we're doing is what's right...So we're at a crossroads in our lives and look to each other as well as others for strength. Thank you for the continued thoughts and prayers for Dylan, we truly appreciate the support.