Image courtesy of www.gusdizon.com Hard to believe its been 3 years since this day. I remember it like it was yesterday but on the other hand it feels like a lifetime ago as well. I want nothing more than to type this and say how great everything is but I can't. I can't for the sake of being accurate, being honest with ourselves, and you whom diligently follow this journey with us.
Our past year has been in some ways hell-ish. Significant changes have taken place, lots of meds added in, and lots of uncertainty remain. This month marks his 9th month in a fairly consistent state of liver rejection (If I recall, we've had 2-3 sets of ok labs during this time frame but was always followed by bad sets for x amount of time).
As of yesterday, Dylan is in a state of bad labs. The most troubling aspect of that is he's on triple immunosuppression (Prograf, Rapamune, Prednisone) and its still climbing. This has been the never ending trend over the last 9 months but now he's on multiple drugs in an effort to combat these things...its just not working (yet anyways). In addition, a few weeks back Dylan and Tegan got the flu (both are vaccinated), for Tegan it was 7-10 days of on/off fevers and a general miserable well being. For Dylan, it was multiple doctor visits, multiple breathing treatments, fevers, and as if that's not enough he also got pneumonia as a secondary infection. That is 2 years in a row that he has succumbed to this from a common cold/flu. That's unfortunately the life of a transplant recipient....never just a simple cold or flu, never just a normal kid getting sick.
Aside from the stuff listed in previous updates and the above just mentioned, I suppose I will just keep things at that, as there isn't much reason to go on and on about things. Amber and I are having a hard time with everything, we really just want things to be better and for things to make a turn for the best...it just seems never ending at times and I'd be lieing if I said its not hard. It's hard watching Dylan suffer at the hands of these drugs, medical procedures, and the constant up/down of the life that comes with this. I know things could be worse, I know we are lucky that he is still here and relatively still doing "ok" but at the same time we can't help but fear the unknown, as well as the never ending chaos that his life currently is on.
As I reflect back on this day, I will never forget our conversation when we all met with Dr. Esquivel some days prior to transplant. He very matter of factually advised us that post-transplant life vs. pre-transplant life is very challenging and often times can be worse. Everything from the challenges of surgery, to the meds, the side effects (cancer related stuff), to a failed liver and starting over, and/or death. It wasn't said to intimidate or cause fear, it was said to advise on what could be. As with anyone in this scenario, there is no option...you move forward and hope/pray that all goes well. I feel very fortunate that Dr. E had this "real" conversation with us, that he didn't pull the doctor card and act detached, and/or sugar coat it. He had a from one parent to another conversation about the difficulties we might face. The only thing I feel sad about from this conversation is that these things he talked about in fact include us. I can only blame myself for having such narrow minded hope that this wouldn't be how it is, I had such an overwhelming sense that if I could just donate my liver to Dylan; that all would be ok. Almost as if that was my purpose in life, my reason for being born, my gift to him....sadly that was nothing more than fantasy in my head and to be honest, it's extremely hard to grasp and see the reality of all this. Its sad, its frustrating, mostly its painful. I'm not a religious person per-say but I have done my own bit of asking for help from whomever is listening...I feel after 8.5 years, it just may be time to realize we are on our own with this life. There isn't a day that goes by that I wouldn't sacrifice my soul to give him simply a 1% better chance to just be better off today than he was yesterday.
I don't know what more to say at this point. I'm grateful for today because I know others have it worse off than us but it doesn't take away "our" pain of what "we" deal with and how "this" path has been going for us. I typically say I hope for better days to come but rather than saying that empty saying...perhaps I should just say I'm hoping we are just ready enough for the continued fight I know we face.
Thanks for keeping Dylan in your thoughts, if only for this moment...we greatly appreciate all your support.
-Noah
Our past year has been in some ways hell-ish. Significant changes have taken place, lots of meds added in, and lots of uncertainty remain. This month marks his 9th month in a fairly consistent state of liver rejection (If I recall, we've had 2-3 sets of ok labs during this time frame but was always followed by bad sets for x amount of time).
As of yesterday, Dylan is in a state of bad labs. The most troubling aspect of that is he's on triple immunosuppression (Prograf, Rapamune, Prednisone) and its still climbing. This has been the never ending trend over the last 9 months but now he's on multiple drugs in an effort to combat these things...its just not working (yet anyways). In addition, a few weeks back Dylan and Tegan got the flu (both are vaccinated), for Tegan it was 7-10 days of on/off fevers and a general miserable well being. For Dylan, it was multiple doctor visits, multiple breathing treatments, fevers, and as if that's not enough he also got pneumonia as a secondary infection. That is 2 years in a row that he has succumbed to this from a common cold/flu. That's unfortunately the life of a transplant recipient....never just a simple cold or flu, never just a normal kid getting sick.
Aside from the stuff listed in previous updates and the above just mentioned, I suppose I will just keep things at that, as there isn't much reason to go on and on about things. Amber and I are having a hard time with everything, we really just want things to be better and for things to make a turn for the best...it just seems never ending at times and I'd be lieing if I said its not hard. It's hard watching Dylan suffer at the hands of these drugs, medical procedures, and the constant up/down of the life that comes with this. I know things could be worse, I know we are lucky that he is still here and relatively still doing "ok" but at the same time we can't help but fear the unknown, as well as the never ending chaos that his life currently is on.
As I reflect back on this day, I will never forget our conversation when we all met with Dr. Esquivel some days prior to transplant. He very matter of factually advised us that post-transplant life vs. pre-transplant life is very challenging and often times can be worse. Everything from the challenges of surgery, to the meds, the side effects (cancer related stuff), to a failed liver and starting over, and/or death. It wasn't said to intimidate or cause fear, it was said to advise on what could be. As with anyone in this scenario, there is no option...you move forward and hope/pray that all goes well. I feel very fortunate that Dr. E had this "real" conversation with us, that he didn't pull the doctor card and act detached, and/or sugar coat it. He had a from one parent to another conversation about the difficulties we might face. The only thing I feel sad about from this conversation is that these things he talked about in fact include us. I can only blame myself for having such narrow minded hope that this wouldn't be how it is, I had such an overwhelming sense that if I could just donate my liver to Dylan; that all would be ok. Almost as if that was my purpose in life, my reason for being born, my gift to him....sadly that was nothing more than fantasy in my head and to be honest, it's extremely hard to grasp and see the reality of all this. Its sad, its frustrating, mostly its painful. I'm not a religious person per-say but I have done my own bit of asking for help from whomever is listening...I feel after 8.5 years, it just may be time to realize we are on our own with this life. There isn't a day that goes by that I wouldn't sacrifice my soul to give him simply a 1% better chance to just be better off today than he was yesterday.
I don't know what more to say at this point. I'm grateful for today because I know others have it worse off than us but it doesn't take away "our" pain of what "we" deal with and how "this" path has been going for us. I typically say I hope for better days to come but rather than saying that empty saying...perhaps I should just say I'm hoping we are just ready enough for the continued fight I know we face.
Thanks for keeping Dylan in your thoughts, if only for this moment...we greatly appreciate all your support.
-Noah
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