Clearly its been a year since I've done an update, its not for lack of wanting to - seems in the past I've only done trying posts, when we are battling this or that and I wanted to do an uplifting post and a progress of where things were at but just never actually got around to finishing it and posting it up.  Which I regret but part of it or likely most of it - I'm sure - is I didn't want to jinx ourselves and the other part was just focusing on the here and now.  I promise I will do more updates in the future, as I feel its important to reflect on the hard times and the easier times. 

Over the last year, lots has transpired but mainly just daily living and doing our best to get by and be as productive with our time as possible.  Dylan turned 12 years old (about to be 13 in June, which is just hard to believe that we're going to have a teenager).  His sister turned 6 but thinks she's going on 15 - ugh but that's a whole other story, ha ha.

Dylan got to attend transplant camp again this past year and actually said he had "fun" and even made a mention if someday he'll be able to be a counselor to kids like him.  Not sure if anyone recalls but this is a big step, him being away from us and actually stating he had a good time - yes he still missed us but I think he had less anxiety and more fun this go around. 

Christmas was good to him, he got what he wanted and begged for.  We got him the new Xbox One S.  His last game system he got was while he was in the hospital recovering after transplant, of which it was from a group of friends that bought him an Xbox 360...so this was a big deal, big for us as it was expensive and big accomplishment that he's come this far and had outgrew the old generation game system.  It was bittersweet to be honest. In addition, being it was the holiday season and Dylan was in good health, we took the family to "A Christmas Story" musical in San Francisco, it was just nice to get out and be as a family and enjoy this time of year and most importantly not be in a hospital or sick for once.  

Winter is typically brutal on Dylan, between asthma and sickness...but honestly this past year was the best year Dylan had ever had in regards to sickness and being hospitalized.  Although he had his bouts like anyone else, it was just that - like anyone else.  I gauge how he did by how much money we spend on medical co-pays and last year was the least out of pocket we have ever spent in 12 years...I can only hope this past year's trend continues.  As I write this, his sister just got over 4 days of that nasty flu that's going around and Dylan to date hasn't gotten it and we're hoping it skips him all together.  Its crazy how the normal things like colds and the flu are what keep us regimented and always on high alert.  Being immunosuppressed requires this though, you can never let your guard fully down. 

2 days ago Dylan was at Stanford for his clinic checkup appointment.  His labs were spot on and being that they've been so stable over the course of the last 6 months, they've dropped his Actigal medication completely (which he has been on this med for 12 years of his life) and they've moved his lab draws from every 4-6 weeks to every 3 months - also moved his in office visit at Stanford to once yearly!  This is a huge milestone and its one we welcome for him. I knew someday we would get here but when you're in the trenches and trying to dig your way out, its hard to focus on when that day will/might come.  Although Dylan will never be completely cured, med free, or out of the woods when it comes to his condition, we appreciate this pinnacle time in his life - where he's just starting to come into his own, that he has less stress associated with persistent lab draws, Dr. visits, and hospitalization. 

We have never looked to erase Dylan's past and what he has endured and overcome but we are certainly grateful for this past year and this weeks good news from his transplant team...we can only hope it continues for the foreseeable future - he deserves it, especially as today marks his 7 year Transplant Anniversary. 

-Noah

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***The images below are in a slideshow format, you can hit the "Play" button on main image or click on individual images to have them enlarge.  To get more images put your cursor over the last picture shown on the right, it will scroll to more images***

It's official, Dylan has officially gone longer post-transplant vs. his pre-transplant life.  

Although he always has challenges and big swings of ups/downs, one thing we know for sure is how hard Dylan tries to always give his best shot that he knows how to give.  It's not easy, imagine being in his skin...he knows nothing other than fighting and being afraid of not only  what every normal kid faces but his is coupled with the reality of his situation that can change on a whim (I think this is probably the hardest for any of us, so unpredictable).

Today marks 6 years since we made our trek to this side of things.  I remember this day like it was yesterday, and to be honest its mind boggling to think that 6 years has already passed.  I will say that with passing time comes reflection, with reflection comes appreciation, with appreciation comes gratitude...and I feel very gracious and blessed for all we have overcome thus far and how much others have helped us be here today.  I think back often on right before this day, all the good people whom surrounded us, did fundraisers for us, offered a lending hand, or simply a prayer to keep us in good spirits.  I haven't and will never forget what everyone has done for our family.  In our time of need, business professionals, personal friends, and perfect strangers banded together around a common purpose; to see Dylan have the opportunity to live some form of normalcy.   

Its been a whirlwind, its been enlightening, its been beyond challenging, its come with good times as well as bad, but in the end....its never broken us as a family.  Today I give thanks, just having the ability to write something positive and congratulate Dylan on being on this side of life, its worth all the pain that has come before it.

-Noah

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.

We always say, it’s amazing another year has passed us by.  This year has been no exception to that as well.  Hard to believe it has been 4 years.  I wish I could say it has been trouble free but at the same time it could always be worse.

As of today we are still awaiting authorization for Dylan from the Psychology and Immunology Department at Stanford.  In addition we are still waiting further testing on Dylan for his academics in school and trying to come up with a plan that he can thrive from, as opposed to consistently falling backwards.

Dylan is currently undergoing treatment for Pneumonia, which is the 3rd time in the last 12 months.  It's a bit exhausting and troublesome that every single time he gets a cold, he ends up with Pneumonia (especially since it can cause scarring).  

To make this not dragged out and winded, what I can say is...There isn't a day that goes by that I'm not thankful, grateful for another day, or blessed to call this difficult life our own.

Our scars are reminders of our resolve as well as strength to continue to charge forward and never give up on the fight and hope for better days.

Thank you all for support and love shown to our family.

-Noah

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

Today is Dylan’s 2 year Transplanniversary.  Hard to believe another year has come and gone and here we are writing about it again (which is a good thing).  Rather than do a complete breakdown of how challenging our past year was, I’d rather only go back a few weeks and give insight of how our lives are lived from day-to-day, week-to-week, month-to-month, and hopefully this time next year I will be able to just use the term from year-to-year. 

We are always brought back to reality of how fragile Dylan’s condition is.  It’s something that we never get total relief from, even on the “good days” which we call uneventful times; it’s always in the back of our mind that something can go south in a blink of an eye.  It’s not a matter of being negative or looking at the glass as half empty but rather this is reality and this is the reality of a liver transplant kid whom is on crummy immunosupression drugs.

Just 2 weeks ago Dylan was hospitalized for 4 days due to what mostly was a bunch of normal/small things that quickly turned into a bigger issue.  Our assumption is his common cold he got from school, turned into double pneumonia (around this time we had labs and they were showing signs that he was fighting a bacterial infection but the docs didn't agree and wouldn't prescribe antibiotics like we requested), which in turn ran down his system even more, which then turned into him getting the extremely contagious Noro-virus…which further dehydrated him even more and only then did they agree and start treating him for ascending cholangitis (which is a bacterial liver infection).  So 3 full days of IV antibiotics + fluids were needed to get him back on his feet, an additional day for observation to ensure he was feeling good again and finally he was released from the hospital.  At least we were out in time to enjoy our wonderful trip that was upcoming the following weekend.

Virtually 2 years ago to the week…we were in the same spot as we were this past weekend.  We were fortunate enough to have been welcomed back to The Ritz-Carlton Lake Tahoe, which is where Dylan’s Make-A-Wish trip was back in 2011 (just a week or so prior to his liver transplant). 

The Ritz-Carlton Lake Tahoe is more than 5 star amenities, more than the glitz and the glamour of a luxurious hotel…and let me tell you; those simple/subtle words do not do this place justice, its beyond fabulous in every imaginable way.  This place is an experience; from the folks at the valet whom ask you how you are, to how your drive was, to saying they’re happy you’re here.  Its crosses all boundaries of what service is all about.  When you stay at the Ritz, you’re truly welcomed like a family member and not one that is awkward like Thanksgiving dinner; it’s like your every hope/dream of what and how one should be treated.  When you’re here, you’re pampered…and not just by way of the finest decor, the softest linens, and/or the most exquisite material things but rather by way of the amazing people.  The folks that work there must truly love there jobs, its shows in there everyday dealings with people and it’s a breath of fresh air to say the least.  It’s the epitome of the human experience.  That is what makes The Ritz-Carlton what it is.

I must say being able to spend the weekend in the same spot as we left off 2 years ago, which was a place of not knowing how things would be, how they would go, or where we would even be in 2 years…it was nice to be allowed that experience albeit only have been for 2 days; I can’t thank certain folks enough who made it possible for us to be there on such a special circumstance.  It truly gives hope and a tremendous feeling of being very blessed for those folks who give a piece of themselves for the sake of others.

As always we thank you for your continued thoughts and prayers for Dylan this past year, unfortunately this past year we have seen our fair share of the hospital, turmoil, and lots of emotional days that feel like a roller coaster ride but we truly believe better days will be in Dylan’s future, its just a matter of when that shift happens and those days of heartache become fewer and far between.  We know it’s a lot for folks to read and take in and it’s ok to think to yourself that thankfully this isn't your life.  Although we don’t wish to change any aspect of our life, we certainly wouldn't wish this on anyone as well.  But at the end of the day, we feel very honored and blessed to be Dylan’s voice, to be his parents, and to be his fighter’s on his behalf.  It’s what makes our family who we are and we thank you for taking the time out of your lives to read a bit about ours.

Here’s to hoping for a less eventful 2013!

-Noah

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***The images below are in a slideshow format, you can hit the "Play" button on main image or click on individual images to have them enlarge.  To get more images put your cursor over the last picture shown on the right, it will scroll to more images***

Hard to believe I sit here and type 1 year later to the day that Dylan's liver transplant took place.  We call this day, Dylan's "Transplanniversary", pretty scary to think a year has already come and passed.  From fears of the what if's, to going through the process, to the constant fears of the unknown, and of course all the in-betweens. What a trying year this has been...

I remember leaving our house the night before and making that roughly 2 hour drive from our house to my cousin's house near the hospital.  We had intended to leave early and arrive early but that's not how our day went.  We had so much on our minds that we didn't end up leaving our house until about 7-8pm at night; arriving to Stanford area around 10pm ish.  The whole day was a process; I recall mentally it being very hard.  A lot had been going on to keep us occupied up until this day, lots of friends/business associates/caring people were doing lots of fundraisers for Dylan and a tremendous amount of love and support was being shown for our family.  Perfect strangers offering support online, old school friends giving well wishes, to lots of family being available to give us the best advice and support they could.  The truth of the matter is, there was not much any one person could say or do to prepare us for our night and upcoming days ahead.  And before we could turn in for the night, both Dylan and I had to shower with antibacterial soap in preparation for surgery the next morning.  I recall as I was washing Dylan that I became really scared, so incredibly terrified for him, and in just a state of disbelief for our situation...Before we went to bed that night, Amber/Dylan/I all prayed; although that sounds like a typical thing to do, this is not something that I had ever done in my life before, as its not how I was raised.  I couldn't help but ask the typical questions that anyone would ask.  Why is this happening to us?  What will happen to him?  Will he be ok?  Will this fix him?  Going to bed that night was beyond hard and it was short lived with very little sleep.  Most of you reading this, came into our lives around this point...Surgery day.  I wont bother with the specifics of this time of our life b/c a lot of you have followed our story and read it already.

One of the things that I think we never mentioned much is what the docs prepared us for prior to surgery.  Prior to surgery we had many meetings with docs, social workers, donor advocates, etc...the one thing that still sticks out in my mind and one that I had hoped Dylan would prove them all wrong was this transitional period after transplant.  I recall us meeting with Dylan's transplant surgeon and discussing how things will go and what we can expect.  The one thing that I can never thank this man enough for is his honesty.  Dr. Esquivel never sugar coated anything at any point on how challenging this would be, he wasn't one of those docs to just keep silent about things, he actually advised on how incredibly hard it would be on all of us.  You see lots of folks like to think of this type of surgery as a end all be all "fix" and as much as we wish/hope for that as well...we knew better and Dr. E made sure we were understanding.  I remember him vividly telling us that "you don't want to have a liver transplant, that if there was a way to avoid it they would but in doing so you trade one life for another".  We at one point pressed on about this "trading one life for another", and luckily for us Dr. E kept true to who he is as a surgeon and a person...he went on to explain for starters the very risky surgery, the extremely hard recovery, and the new life on anti-rejection medication.  The main stress was on these anti-rejection meds, these can be worse than all that we needed to go through.  Hearing about medications causing cancer, liver damage/failure, and death as a result of it...I will admit it was so hard to comprehend how one can go through all this hardship, pain, stresses and than have to be on medications that can cause just as bad a situation than the unfortunate one Dylan was born with....seemed cruel, unusual, and I think its fair to say it just didn't register in our brains properly.  But like anything else in most people's lives, how does one truly understand or know what its like unless you walk that walk.  We had no choice but to almost turn a blind eye to this information as we truly couldn't relate to it at the time.   As you know Dylan and I made it through surgery day, had some rough ups and downs in the hospital but none the less we were in and out of the hospital in what I would consider an amazingly short time frame...especially given the unbelievably complex surgery such as we both had.  This brings us to the last 365 days of our lives.

Over the course of the first few months we actively did everything in our power to get back to a sense of normalcy.  I think we longed for a less eventful life; one with less doctor visits, lab pokes, and more time to feel like every other "normal" family.  These first few months were extremely difficult, constantly heading back to Lucile Packard for follow up visits and adjustment of medications.  Not everything has gone as planned or maybe its best to say not everything has gone as we hoped for.  We unfortunately now truly understand what Dr. E and the other docs were talking about...again, unless you live it, you just can't relate to it and even though we were living the life we still couldn't grasp what we were in for.  Dylan has spent the better part of this past year in and out of doctor offices, labs, and hospitals.  His medications have been altered so many times we have lost count.  The only way to truly understand and grasp what's he's gone through is to take a quick snap shot into his life over the last year.

- 4 Separate Hospital Stays
- 2 Liver Biopsies 
- 1 MRI
- 1 MRA
- 2 CT Scans
- 10+ Ultrasounds
- 3 Emergency Room Visits
- 17 Days In-Patient 
- 10 In-Clinic IV Infusions
- 14+ Urgent Care Clinic Appointments
- 30+ Transplant Clinic Appointments
- 100+ Lab Draws 
- 2,500+ Doses of Medications

The life we had longed for Dylan, we still do.  It's not our life and its simpler means we seek for ourselves but rather taking a look at what this little boy has gone through and realize at some point and on some level...the tides have to turn.  We can only hope and pray that this challenging life we all live will slowly fade with time.  We do the best we can and with that we have to continue to press on for Dylan.  We know that Dylan will forever live a "different" life surrounded by medications, doctors, fears of side effects to the meds, and the wonderful/special place that Lucile Packard Children's Hospital is.  This is now a realized realization and one that is a tough pill to swallow but we are fortunate that we have a place we can trust, a place that will continue to care for Dylan when the tough gets even tougher.

Thank you to the surgeons, doctors, caregivers, family, friends, business associates, and perfect strangers whom have banded together in unity for our son.  To those who have written us emails, commented on the site, and selflessly donated money to our family during this continued extremely difficult time of our lives....there are no words that give enough thanks; we truly Thank You from the bottom of our hearts.  This is a lifelong battle that has not been the easiest life to live but I couldn't imagine it being any other way, as the alternative that others have been dealt is one that I'm not willing to face.   Please keep Dylan in your prayers, keep good feelings towards him, as this last year has proven to us that in an instant it can all change. 

-Noah