It obvious we have not posted, not even for Dylan’s 5 year transplant anniversary back in February. I suppose it was on purpose, like so many times before. It’s ironic that when things are going decent for the moment, how you’ll do anything to keep that trend…even to the point of not doing something so you don’t “jinx it”. Sad that’s how we view things, holding on to a glimmer of imaginary or hypothetical hope that really doesn’t amount to anything; this is what we do at times and this was one of them.
So I guess we might as well just jump right into this past week(s). We’ve spent the last 5 days in turmoil, in panic, in fear of what was to become of our upcoming Tuesday morning (day after labs were to be repeated). Rewinding to 2 weeks ago to Dylan’s labs, they were great! With exception of his Eosinophils (these are a disease fighting white blood cell, it’s also a marker they look at in allergic people as well), well they were at 24% (you and me typically run 0-2%). This past Thursday saw Dylan at Stanford for a routine check-up, they opted to do labs because he was there and just to be on the safe side.
Friday morning I got a call from a transplant coordinator (our regular one was out) that Dylan’s labs were drastically changed/high (100%’s over what they were for most of them). They wanted him immediately setup for a liver biopsy, repeat labs at the hospital the following day and to prepare for biopsy on Monday. After having a few conversations they also wanted to add in an upper Endoscopy at the same time (2 different doctors to coordinate for this) and now they needed to move the appointment to Wednesday. Yes, this is a lot to take in…yes, it’s like being kicked in the face and then adding salt into the wound. But we don’t get the option of just complaining and groveling in our own misery, we have to pick ourselves up by our boot straps and focus on what needs to be done for Dylan. The kicker was the timing, as Dylan is graduating from 5th grade on that Thursday and would of missed his elementary school graduation, which he’s also transferring school districts and leaving behind his friends…it would be a big deal, not to mention he’s already missed so many things in his life.
I had expressed to the coordinator that this has become a sporadic but all too common theme with the no warning/roller coaster labs out of nowhere. Literally a week prior, the labs were spot on perfect (again except the Eosinophils) and at this last Stanford visit on Thursday had finally advised we could go 6 months between visits and now here we are, honestly not even 24 hrs later and it’s a complete reversal. In talking more with her, I mentioned that repeating labs the next day would not be advised, it will only show the same and I pressed her to allow us to wait until Monday to repeat them, as I know from the past and numbers like he has that no change can be had in less than 24 hrs based on where he was at. I also mentioned we (Amber and I) really feel that after 3 biopsy’s, countless years of steroids to treat the rejection that has never been found, that we are back talking about taking these same steps again and I just can’t wrap my head around this. That I feel we need to all take a step back and focus on Dylan, not statistics of what is normal with others but just Dylan. I wanted to talk about the correlation between his always high Eosinophils and the prospect of the Interleukin-5 (IL-5) IVIG treatment that we have been waiting on, counting on, holding onto to hope for nearly 1.5 years now…we really feel that this is intertwined, if not 100% completely what’s causing all this chaos. Although his transplant and anti-rejection med is the cause for the issues, we want to get to a point where we can understand that this new life, one that started on 02.07.2011, and start treating the long term byproduct of where we are…ultimately we want to treat the effects of this lifelong situation.
Our weekend was arduous, was nerve racking, it was like so many that has come over the course of darn near 11 years thus far. Monday saw us at the lab bright and early as a family and Tegan asking why Dylan needed to get poked again and if it would hurt him. We always tell her that its necessary in his life to ensure he is safe and healthy. I know she doesn’t quite get it, at times I myself feel like I need a poke to wake up from this life, not that I wish it to be any other way but just for it to be easier for him. For the remainder of Monday, Amber checked her cell phone for incoming labs no less than 100’s of times. They wouldn’t come through until about 10pm at night. With one eye open and the other shut, she would pause prior to clicking on each individual test, we check the least important ones first before moving onto the LFT’s (liver function tests)…1 by 1, each one was reduced and by a lot. Although we breathed a sigh of relief, it really was to save the torment this would have had on Dylan. Even as adults it’s hard to understand and is always emotionally charged.
The following day I spoke to the coordinator again, she was shocked (again she’s not our usual point of contact) that his labs had taken such a drastic turn; she even thanked me for pressing to hold off on labs until Monday. I asked her to speak to Dylan’s doctor to get his input and start a dialogue with the allergy department to see if they can all come together and find a solution, hopefully start the process of moving forward for the IL-5 IVIG treatments. She advised they would and also agreed to continue the Endoscopy process as we feel this is another item that needs to be addressed to confirm more allergy issues through Dylan’s body. Amber and I are convinced Dylan is riddled with Eosinophils in his esophagus, stomach, organs. Although we don’t want Dylan to have to go through another procedure, everyone feels it’s important to know more about what’s going on in his anatomy.
We opted for the first time in our lives to not tell Dylan about all that was going on, although I think deep down he had an idea something was a bit off. We have never done this before but after hearing him talk about his graduation day and what not, we just couldn’t bring ourselves to upset him because what if Monday labs were better and this was all called off for now? That is what we held onto, we held onto it for the sake of him and I'm thankful we did.
As Tuesday night came to an end, we were trying to be positive and just keep moving forward…almost as if none of this had transpired over the course of the past 5 days. While Amber was getting Dylan ready for bed and going over his school work she found this note, one might even say a poem.
So I guess we might as well just jump right into this past week(s). We’ve spent the last 5 days in turmoil, in panic, in fear of what was to become of our upcoming Tuesday morning (day after labs were to be repeated). Rewinding to 2 weeks ago to Dylan’s labs, they were great! With exception of his Eosinophils (these are a disease fighting white blood cell, it’s also a marker they look at in allergic people as well), well they were at 24% (you and me typically run 0-2%). This past Thursday saw Dylan at Stanford for a routine check-up, they opted to do labs because he was there and just to be on the safe side.
Friday morning I got a call from a transplant coordinator (our regular one was out) that Dylan’s labs were drastically changed/high (100%’s over what they were for most of them). They wanted him immediately setup for a liver biopsy, repeat labs at the hospital the following day and to prepare for biopsy on Monday. After having a few conversations they also wanted to add in an upper Endoscopy at the same time (2 different doctors to coordinate for this) and now they needed to move the appointment to Wednesday. Yes, this is a lot to take in…yes, it’s like being kicked in the face and then adding salt into the wound. But we don’t get the option of just complaining and groveling in our own misery, we have to pick ourselves up by our boot straps and focus on what needs to be done for Dylan. The kicker was the timing, as Dylan is graduating from 5th grade on that Thursday and would of missed his elementary school graduation, which he’s also transferring school districts and leaving behind his friends…it would be a big deal, not to mention he’s already missed so many things in his life.
I had expressed to the coordinator that this has become a sporadic but all too common theme with the no warning/roller coaster labs out of nowhere. Literally a week prior, the labs were spot on perfect (again except the Eosinophils) and at this last Stanford visit on Thursday had finally advised we could go 6 months between visits and now here we are, honestly not even 24 hrs later and it’s a complete reversal. In talking more with her, I mentioned that repeating labs the next day would not be advised, it will only show the same and I pressed her to allow us to wait until Monday to repeat them, as I know from the past and numbers like he has that no change can be had in less than 24 hrs based on where he was at. I also mentioned we (Amber and I) really feel that after 3 biopsy’s, countless years of steroids to treat the rejection that has never been found, that we are back talking about taking these same steps again and I just can’t wrap my head around this. That I feel we need to all take a step back and focus on Dylan, not statistics of what is normal with others but just Dylan. I wanted to talk about the correlation between his always high Eosinophils and the prospect of the Interleukin-5 (IL-5) IVIG treatment that we have been waiting on, counting on, holding onto to hope for nearly 1.5 years now…we really feel that this is intertwined, if not 100% completely what’s causing all this chaos. Although his transplant and anti-rejection med is the cause for the issues, we want to get to a point where we can understand that this new life, one that started on 02.07.2011, and start treating the long term byproduct of where we are…ultimately we want to treat the effects of this lifelong situation.
Our weekend was arduous, was nerve racking, it was like so many that has come over the course of darn near 11 years thus far. Monday saw us at the lab bright and early as a family and Tegan asking why Dylan needed to get poked again and if it would hurt him. We always tell her that its necessary in his life to ensure he is safe and healthy. I know she doesn’t quite get it, at times I myself feel like I need a poke to wake up from this life, not that I wish it to be any other way but just for it to be easier for him. For the remainder of Monday, Amber checked her cell phone for incoming labs no less than 100’s of times. They wouldn’t come through until about 10pm at night. With one eye open and the other shut, she would pause prior to clicking on each individual test, we check the least important ones first before moving onto the LFT’s (liver function tests)…1 by 1, each one was reduced and by a lot. Although we breathed a sigh of relief, it really was to save the torment this would have had on Dylan. Even as adults it’s hard to understand and is always emotionally charged.
The following day I spoke to the coordinator again, she was shocked (again she’s not our usual point of contact) that his labs had taken such a drastic turn; she even thanked me for pressing to hold off on labs until Monday. I asked her to speak to Dylan’s doctor to get his input and start a dialogue with the allergy department to see if they can all come together and find a solution, hopefully start the process of moving forward for the IL-5 IVIG treatments. She advised they would and also agreed to continue the Endoscopy process as we feel this is another item that needs to be addressed to confirm more allergy issues through Dylan’s body. Amber and I are convinced Dylan is riddled with Eosinophils in his esophagus, stomach, organs. Although we don’t want Dylan to have to go through another procedure, everyone feels it’s important to know more about what’s going on in his anatomy.
We opted for the first time in our lives to not tell Dylan about all that was going on, although I think deep down he had an idea something was a bit off. We have never done this before but after hearing him talk about his graduation day and what not, we just couldn’t bring ourselves to upset him because what if Monday labs were better and this was all called off for now? That is what we held onto, we held onto it for the sake of him and I'm thankful we did.
As Tuesday night came to an end, we were trying to be positive and just keep moving forward…almost as if none of this had transpired over the course of the past 5 days. While Amber was getting Dylan ready for bed and going over his school work she found this note, one might even say a poem.
This life we’ve been given is brutal mentally for all involved, most importantly is the toll it takes on Dylan. In the past, we looked at things and said, at least he’s young, he only knows this life. It was this moment seeing this note we’re hit with the realization that he is growing up and has many more challenges ahead of him...we realize once again that officially everything has changed.
Please keep Dylan in your hearts, prayers if you do that, and help us keep his fight...I can only hope at the end of this struggle, it has a profound purpose.
Thanks for reading and keeping up on Dylan.
-Noah
Please keep Dylan in your hearts, prayers if you do that, and help us keep his fight...I can only hope at the end of this struggle, it has a profound purpose.
Thanks for reading and keeping up on Dylan.
-Noah
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