It’s been extra-long since an update…it has also been filled with lots of up’s and down’s and we wanted to wait it out until we had more info.  So much has transpired over the course of these last 3 months, I truly can’t even recall it all.  It has seen countless visits to Kaiser, to Stanford Children’s, and of course the usual in-betweens.

At the beginning of the year we mentioned about Dylan’s need for Psychology intervention, discussing further with Immunology Dept, and just trying to get this never ending roller coaster of up/down labs to come to some form of normalcy. 

As of today, nothing new in regards to psychological intervention has been figured out.  Kaiser doesn’t have anything for him and Stanford is so far away that it would require taking random full days off work and school…it’s just not really feasible to travel hrs on end to talk to someone for less than an hour.  Dylan missing school is more of a concern as he needs all the assistance he can get.  We are still actively trying to figure something out for him though…just don’t know what yet.

We were fortunate enough to get in with world renowned Immunologist Dr.  Kari Nadeau MD, PhD.  She is head of the Immunology Dept at Stanford Children’s and director of the Sean Parker Center for Allergy Research at Stanford.  She is someone whom we have wanted to talk with again for a very long time.  Back in 2012 we met with Dr. Nadeau briefly about Dylan but she felt immunology and how it relates to liver transplantation wasn’t quite in sync at that time.  Amber and I have stated over and over, as well as many times on here, that we believe Dylan’s erratic labs and his constantly high Eosinophils were either relating to an Autoimmune issue or something that needed further looking into from Immunology, as those are allergy marker cells.  It’s always been an ongoing issue with him.  They’d do a liver biopsy and never see rejection cells but they always see a ton of Eos's, which isn’t normal.  Back then in 2012, Dr. Nadeau didn’t feel there was a direct correlation…but now flash forward to 2015 and things have changed. 

We have had multiple conversations with all of Dylan’s Dr’s, as well as them all having a meeting together to discuss Dylan’s predicament.   They all have agreed to look further into this being Dylan’s immune system that’s causing flocculation’s in his liver.  Dr. Nadeau also informed us that through these past few years a lot of advancements in medications and research has been made overseas.  She informed us that she, like us, believes that Dylan’s system is constantly irritated and revved up due to his extremely high Eosinophils.  If they can reduce his Eos's, she’s confident she can make most/if not all of his anaphylaxis go away.  The hope is that in reducing his highly allergic cells from constantly being on guard, that it will calm down the rest of his system, and thus calming down the inflammation that seems to come and go in his liver.

The treatment is called Intravenous Immunoglobulin (IVIG, more specifically targeting IL-5) infusions.    In short, they will be injecting IG plasma that would be specific to killing off Dylan’s Eos’s, where as in other forms of this treatment it’s used for supplementation/replacement therapy.  The thought is, every 3-4 weeks Dylan would have to go to the hospital and have these treatments (they take 2-4 hrs).  The desired outcome is to be methodical in lowering (killing off) the current Eos’s in his blood to that of a normal person (6% and under)…in doing so, hopefully it will settle his system down and he can go about his life a bit less susceptible to normal elements, every cold turning into Pneumonia, or causing a bump in his labs…which in turn causes inflammation in his liver. 

There are a few downsides though, often IVIG treatments are for a very long time (at min years) and often up to the rest of your life.  The other being, this process of what they want to do to Dylan isn’t approved in the US, although it’s used for different conditions, it’s not approved for use of Eosinophilia.  Dr. Nadeau is contacting the FDA for approval to use the medication/procedure over here for Dylan.  We are currently awaiting word back on if they will allow this for him.

We have lots of hope but at same time lots of worry as well.  The hope of course is…it all works out as it should on paper.  The worry/fear is, what if it doesn’t…how do they undo it.  What if his body goes on attack mode and things get worse and we end up on a destructive path that nobody has firsthand experience with.  The hopeful side of us has to still be diligent about asking the pertinent questions.   But we are bracing for a hard summer, hopefully one that sees positive results.

Thanks for keeping up on Dylan; I know he appreciates it as well.  Every so often I catch him on his computer looking at his site and reading through what we’ve written.  Hard to believe in less than a month our little man is turning 10 years old.  Wish us luck as we embark on this next chapter of our lives.

-Noah

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

Over the last 2 months, things have been extremely rough in the Levy household. 

Before School let out for Christmas break, we had a sit down with Dylan’s teacher….Dylan is really having a hard time with school.  He is struggling with virtually all areas of his studies and most notably math.  The new way of teaching makes it extremely hard for us as parent’s to help, we search google, youtube, and virtually anywhere to understand the processes of how they are being taught now and its very frustrating for us, let alone for him.  The new way of teaching (common core) is very hard to understand and very much a long drawn out way of doing things.  If you don’t have your number facts down pat, you will struggle, as this is so much more than just finding an answer to a problem, its critical thinking and often times thinking in reverse to get the answer.  Its tough and its extremely tough on Dylan, especially since he has missed a lot of school during those informative years.  Because of this and him not getting the help we feel he needs and deserves, I have challenged the School district for an IEP (Individual Education Program).  You see Dylan is on a 504 Plan (this is for students with disabilities, albeit it mental/physical/medical) and if you ask me this “plan” has failed him.  He has been brushed aside and left to fend for himself.  I don’t think its done maliciously but more a function of our flawed understaffed and funded public school system.  This has been a major hurdle and one that has us fighting with Dylan to get him the help he needs and at the same time still trying to keep him on track with his current coursework. 

More concerning to us has been Dylan’s mental state, he has gone from a fairly happy go lucky kid to one that over the course of the last few years has grown increasing more upset, angry, and hurt.  It’s apparent he needs mental support from an outside influence and we feel strongly that he needs some form of psychological therapy.  The truth of the matter is, he's traumatized by his past and current existence.  He spends his days in constant fear of everything for the most part, albeit allergies, his liver getting sicker, etc...He’s at a critical state of which we feel he needs intervention before it’s too late.  We attempt do everything we know how to do but he needs support from a professional.  We just don't know what to do for him anymore, he needs an outside influence, as parents he will only take in so much from us and to be fair to the situation, we aren't professionals who understand how to help in this scenario. 

So I contacted his Doctors at Kaiser, whom referred me to their “Psychology” dept.  After going in circles and advising them that I’m not just going to allow him to see just anybody, have him bounce from person to person, as I feel he needs to be with someone whom understands him, his situation, his predicament, and his medical challenges….it was obvious to me they would not be a good fit.  After emailing Stanford and discussing, we have been granted a referral to Stanford from Kaiser, as they have a team whom helps kids just like Dylan (ones that go through medical related trauma).  So we are anxiously awaiting this meeting and taking a step towards a happier Dylan.  I can only hope it helps and that we’re doing the right thing.  

Not too much of a shock is the continued roller coaster labs …from bad, to ok, to bad again.  Yesterday saw us at Stanford for consult with our transplant team.  Not only are Dylan’s liver labs bouncing around, so is his blood counts.  They are off, way off as well.  His Eosinophils are out of control, seeing them as high as 37% and his absolute count nearing 2,000 (like 10x what it normally is in a person).  He’s anemic, causing low RBC’s.  He also had Hyprchromia, which means pale RBC’s, and also Microcytes, which are RBC’s that are smaller than they are supposed to be.  And to make matters worse, he also just tested positive for EBV (Epstein-Barr Virus). This is concerning because this virus causes Lymphoma (Cancer) in transplant patients, its called PTLD (Post-Transplant Lymphoproliferative Disorder).  This is why Dylan had his Tonsils and Adenoids removed 1 year post-transplant, as it was harboring in those tissues.  The doctors have ordered him back on Valcyte (anti-viral med) and reducing his Rapamune (anti-rejection med) in hopes of allowing his body to let it go back into remission.  It’s a fine balancing act though, lower immunosuppression too much and he can go into rejection, not low enough and the EBV can continue on its destructive path. 

To say the least, we are going through a very hard time right now.  I have no doubt his meds and the multiple relentless issues are compounding everything and playing a big role in his state of being.  He's really a hurt kid trying to deal with it the best he knows how, we all are.  It’s heartbreaking to see/hear his frustration, anger, and overwhelming feeling of hurt he has.


-Noah

I honestly don't even know where to begin.  I can't even say sorry for the delay in not posting because it was intentional that we held off this go around.  I know we have said in the past that we hold off as we want to ensure we have a couple sets of good labs before we get excited, this time was no different, but in some manner it was/is very different as a lot has transpired over the course of life since the last post.  With that being said, I will keep this post semi short.

As of last post, the transplant team was going to be moving forward with doing a Biopsy but randomly the night before we were scheduled to head to Stanford for a few days his labs came back remarkably better (completely off the wall and random).  We have always agreed/mentioned that being on steroids has always netted questionable findings when it comes to the Biopsy.  So they cancelled it and instead had us stop all of Dylan's steroids so we could get a true baseline.  The main reasons being is nothing was getting better, it was a rocky road regardless, so the thought was to stop the steroids and see what happens.

We waited to do labs, they came back good.  We waited at interval for another set of labs, they came back even better!  At this point I was ready to do a journal update, as that was 3 sets of labs and they were the best they had ever been in over 2+ years.  We for sure embraced each other as a family and felt like we might be on to something, perhaps we turned a new page in this post transplant life we are on.

School year started and low and behold just a few weeks in Dylan gets the common cold like everyone else.  Of course that's not how it ends, this cold turns into a miserable 1 month of fighting double lung pneumonia and no less than 6-8 specialty and doctor visits, which included all sorts of medications again.  We at this point can't do labs, of course they would be messed up, the course is to hold off until he is better (by at min 1 week before doing labs).

We are a few days shy of getting labs done and Dylan has an anaphylaxis incident.  For those that don't know, Dylan is highly allergic to many foods (common for immunosuppressed kids).  Amber had decided to get Dylan a treat, she read the bold allergen information (may contain traces of ...which is fine for Dylan, he can have traces or shared on same equipment, etc.) and it looked good at quick glance but it turned out that in the finer print it had cashews in it.  Within minutes of him eating it, his lips puffed up, eyes swelled and at this point we were already cramming down 25mg of Benadryl and on the phone with his GI doc to see how much Prednisone to give, which was 40mg.  Amber was one step away from using the EpiPen but we didn't feel it necessary b/c his airway was still good.  At this point his symptoms were getting worse, so it was off to the ER.  Once in the ER they advised we did everything they would of done and felt we did the right things, so they sent us home and advised to diligently watch him over the next 24-48 hrs (as symptoms can come back). 

That was 1.5 weeks ago, so yesterday was time for Dylan's labs.  Unfortunately, as so often this life goes, his labs are all elevated and not just a little, by a lot.  So we have come full circle again, from the lowest of lows to the highest of highs.  We constantly wonder if he has other stuff going on, that is either medication related or medication induced.  I just don't know how much more we/he can take of this.  Perhaps we have caught the labs as they are trending down, perhaps labs next week will make a turn for the better, perhaps this is how it's going to forever go...the latter can only go on so long and thus far we are coming up on 2 years of roller coaster labs (which is persistent inflammation of his liver).  

I know I haven't hit all the details as I typically do but to say the least, my brain just isn't working properly anymore, we are having a hard time with all this, Dylan is having an extremely hard time with everything as of lately, and I guess wanting normalcy to some degree just isn't in the cards yet.

-Noah

Its been 4 weeks, which means in that time frame we've had 2 sets of labs drawn.  As mentioned before, we never update based on 1 set of labs...we know better, we know that this life is about looking at trends and to do so means not getting excited when you see a decent/good set of labs.  Today this holds true again and today is an especially darker day for our family.

Last post we advised that the docs were going to try something new, that they were going to lower his anti-rejection med and his steroid level.  More or less that is what was done (basically cutting the levels in his body in half.  He went from a Prograf level of 11-12 to 5-6, his Rapamune level now being at 5, and Budesonide from 6mg to 3mg).

2 weeks ago, Dylan's labs were basically all in "normal range" and for the first time in a long time we felt we might be on to something.  We kept true to our form though and said, "let's see what the next set of labs are".  Those labs came back about midnight this morning and as Amber read them out loud, it was apparent lots was about to change.  Dylan's labs are the worst they've been in over a year, it might even be longer but at 12-1am, that was as far as Amber could look back in the history.

For those interested, here were some of his labs:

• 334 ALT
• 408 AST
• 224 ALK 
• 168 GGT

Not to get to far off topic but I feel guilty that just yesterday I was complaining on my Facebook page about how our family has never had a "real vacation" and here's a little excerpt on what I had mentioned.
   
"I feel crummy as a father/dad/parent that I have never supplied those memories to my kids as of yet, let alone any to be perfectly honest. Not to makes excuses (ok maybe a little) its been a rough 9 ish years, still is, but as I look back on it all...its semi negative in the sense that it's been nothing but medical/hospital stays, financial struggles, and well lots of stress". 

I can say that as I typed that, I thought to myself, how selfish it is of me for thinking that its something that we deserve and/or is owed to our family.  Today I feel that burden of my statements, today I feel that guilt of my complaining, today I would give anything for just better labs that appeared on our cell phone.

So far over the last 1 1/4 years now, they have tried pretty much everything to get Dylan's liver back to being happy and it has all been met with more suppression and more drugs because it just won't normalize.  I know this latest set of labs will bring a hospital stay for us, this will warrant another liver biopsy for sure but more importantly, where do we go from here?  It appears they have exhausted most of the least invasive routes.  I know enough to know that this can't continue this way, this is what leads to organ failure (in time) and being on the path for another transplant. The thought of our next step/steps is hard to think about to be honest.  

What do we tell this guy when he wakes up today?  How is he suppose to understand?  What keeps him from giving up?  As his parent and more importantly his mom/dad we are suppose to hold it all together, what does one do when that option feels like its crumbling apart...

-Noah

We always say that we often don't update when we don't have much changes...it has been no exception over the last many months.  

For over the past year now, he has been more or less the same as we have been discussing in the various other posts.  Dylan is still battling the never ending roller coaster ride of elevated liver labs.  He has been on/off steroids, variations of steroids, and multiple additional meds.

Due to Dylan's constant state of elevated labs and extremely immunosupressed state, his kidney's have taken a hit.

Yesterday saw Dylan back at Stanford to see Nephrology as well as the Liver Transplant team.  All-in-all it was an uneventful day with more or less just ensuring he is holding his own while the kinks still get worked out.  The general consensus was that Dylan needs his Prograf levels reduced, as well as his steroid intake reduced.  As you can see in image above, Dylan's face is extremely round (from all the steroids).  It has always been Amber and my thought that Dylan's body is super sensitive to the immunosuppression drug Prograf.  In the past when he was in the 2-3 level range, his liver seemed much happier (it also wasn't in a chronic state of inflammation though), his current level is at 10-11...which is about as high as it was only a few days out from when he had transplant surgery.  I do like the idea that they are now leaning towards trying to get all these levels down (which would make his system not as suppressed), seeing as being on the super suppressed side isn't working...the last year plus has proven that.

On another note, it was Dylan's B-day over the past weekend.  Hard to believe he is 9 years old and going into 4th grade.  We are super proud that he has been able to maintain and do fairly well in school through all this.  For those that don't know, the meds he takes cause all sorts of issues (from being able to focus, irritability, and cramping of his hands).  He has his moments and we have ours, its a fine balance like anyone else raising a kid(s), its just slightly different for him and its just another thing that he must try harder at, as for now he has to be on these medications for life.

It's hard for most to relate to any of which Dylan goes through.  I can say for the first time in my life I have had and currently still dealing with a very small glimpse of his medication induced dealings.  I injured my back (heinated disc at L5-S1, compression at the Sciatic Nerve, and narrowing of the spine).  I have been on a high dose of Prednisone for the last 2+ weeks and just like I see in Dylan when he is on high doses of it, it's a very frustrating drug.  It causes mood swings, uncontrollable hunger urges, and just an all around irritability from weird thoughts to flushness of skin.  It's not fun but the worst part is the mental side of it.  Being I'm an adult and can reflect on past of not being on this type of drug, it worries me how as a child he deals with this and not having the past "normalcy" to reflect back on.  How does this affect him later on, how does this skew his thoughts for future, and how does he get past all he's ever known as his "normal"?

I would be lieing if I said this isn't a scary time for us, they are basically taking a kid with no immune system and going to let him be susceptible to the elements (in the past year it hasn't worked, it only has put him further into rejection).  We are super hopeful that the next 2-4 weeks go polar opposites as they have in the last 13-14 ish months.  Wish us luck!

-Noah

Today was a 4:30am wake up in order to get everyone ready and off to the Medical Imaging Dept at our local Kaiser.  Dylan's Kaiser GI doc ordered a MRCP (which is a MRI specifically for the liver).  

Dylan was super nervous but he handled it like the trooper that he is, no sleepy meds, no calming meds, just ole fashion tough guy stuff.  The technician even said he was awesome and "better than a lot of his adult patients".  

The results on the MRCP:

- No Dilation notated
- Renal Cyst notated 


So the long and short of this is no strictures were seen during this test, which is what we were concerned about but that he does now have a Renal Cyst (Kidney).  Dr. Rich is concerned and wants a liver biopsy done.  He wants to eliminate the potential for Vanishing Bile Duct Syndrome (although very rare).

Symptoms:

- Hyperlipidemia
- Fat-Soluble Vitamin Deficiency 
- Elevated: ALK Phos
- Elevated: GGT
- Elevated: Direct Bilirubin 


Dylan has lots of these issues listed but it's too early to freak out about it and I'm holding on that it's "very rare" to have that issue but yet we can't ignore any of these potential issues.

Amber spoke briefly to our transplant coordinator over at LPCH (Stanford), she mentioned she is going to discuss with the team about doing a ERCP, which is: Endoscopic Retrograde Cholangiopancreatography and is a technique that combines the use of endoscopy and fluoroscopy to diagnose and treat certain problems of the biliary or pancreatic ductal systems. Through the endoscope, the physician can see the inside of the stomach and duodenum, and inject radiographic contrast into the ducts in the biliary tree and pancreas so they can be seen on X-rays.

The quick thought is perhaps the connection that connects Dylan's liver to his intestine (which is also known as Roux-en-Y) is hardened and has a stricture (the MRCP wouldn't necessarily see this and by doing the ERCP they could visualize these area's and see if they see something the MRCP imaging does not).  She also mentioned about doing the liver biopsy at the same time.  For those that don't understand what Roux-en-Y is.  Think of having your exterior bile duct(s) hooked right to your small intestine...still doesn't make sense?  Here is an image (as you can see, he has altered anatomy b/c he didn't get a deceased liver which often times will come with a complete biliary tree and gallbladder which then hooks up to the intestine like everyone else, although not always...just depends on lots of other things from that liver donor and the need to section it, etc...I won't bore you with the details of that stuff.)

For now we wait to hear the final word from LPCH and see what they want to do, although we know its going to be some semi-invasive procedure unfortunately.  

I'm not going to lie, I have had my heart pounding in fear for the last week in anticipation of this test.  I'm happy the results are such that aren't super negative but leave more pondering than answers (as well as the added Kidney Cyst, which I haven't even had time to process in regards to what that all means...hoping its medication related and that's that but perhaps that's wishful thinking on my end).

As much as I love how strong Dylan is through all this, it also hurts to know the stuff he's forced to be strong about.  We often times only reflect back as adults and lose sight that he's only 8 years old, he's been doing this his entire life and as a sense of reflection on a very young life...that's a very crummy thought that I can never shake.

-Noah

10 months, this now marks 10 months that Dylan has been dealing with unstable labs/liver inflammation/liver rejection.  

We have been in contact with the liver team at LPCH in an effort to see what is going on and what the next plan of treatment is, thus far its just been more meds but the meds aren't working anymore.  Dylan is on a big dose of steroids, in fact he's on two different steroids and its not making his liver numbers come down. In the past (previous times prior to this) it has always brought his numbers down and in normal ranges but that's not the case.

Amber and I have suggested that perhaps Dylan is having some form of Autoimmune Hepatitis (AIH), they have more or less dismissed that notion.  We have been given a referral to see the Immunology Dept. at Stanford, as mentioned before we all think that Dylan may be having some form of allergy response which could be affecting his cells, which in turn are attacking his liver.  We are still waiting to be contacted, we are still waiting for a return phone call, we are still waiting for them to get back to us, and the LPCH team.

Dylan had more labs the other day, its troublesome to see the amount of meds he's on again, as well as the doses, and seeing that none of it is making him better.  The longer he stays in "rejection" the more scarring happens.

Yesterday we were at Kaiser to see Dylan's GI doctor (Dr. Edward Rich).  We had a real conversation about Dylan's struggling predicament and how he is very uncomfortable with how long he's been in a state of hepatitis.  He said he is very concerned for Dylan's liver and the possibility of a very negative outcome if things don't get under control soon.  He mentioned it can only go on like this for so long.  Amber and I chatted and we requested that Dr. Rich order a MRCP.  For those that don't know, a MRCP is: Magnetic Resonance Cholangiopancreatography it's a medical imaging technique that uses magnetic resonance imaging to visualize the biliary ducts with contrast dye.  Our reasoning for this is Amber and I think that Dylan potentially has some sort of bile stricture going on.  A bile duct stricture is caused by narrowing of the bile duct. The narrow bile duct prevents the bile from draining into the intestine, which causes it to back up in the liver, which causes hepatitis and damage (scarring).

If this is what's going on, this could be the reason he's been on the path he's on.  Although this was mentioned to Stanford, which they never even acknowledged that statement.  Dr. Rich said he just wasn't sure what potentially is going on with Dylan but that he says something needs to be figured out quickly.  Being on high doses of steroids like he is, for one is dangerous, makes him more susceptible to infections, and among other things causes bone issues, diabetes, and some really other nasty stuff.

So Dr. Rich agreed it would be a good idea to have this test done and feels we are either correct in our thinking and/or at min it could rule that scenario out.  So he ordered it, we've already been contacted, and Monday at 6am Dylan will undergo the procedure.  I know I've said this before but this man is a blessing to us, I feel as though he is one of our family members, as though he understands us, and that he deeply cares for Dylan as well as us as parents...yes he's Dylan's doctor but his sense of compassion is obvious and his meaningful concerns are what are felt, which is rare and it's appreciated.  

This marks by far some of the hardest months of our lives.  All we seek is answers but yet we are totally in the dark for the most part.  Our days pass us by and the next thing we know its been another set of bad labs, more doctor visits, more medical bills, and then we blink and its been another month that we've just barely made it by.  With each passing day/week/month we are one step closer to hearing those fearful words, that Dylan's liver is in a state that can't be reversed....this haunts me everyday, every night that I lay awake in bed, its on my mind constantly and not because I'm negative but because that is a reality if things don't change soon.

-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

Just a little update on Dylan.  Since the beginning of this year we have been dealing with a lot of unknown in regards to his condition and the constant elevation in LFT's.

This morning Dylan spiked a fever of 103*f, which is very worrisome, as he has no real other symptoms of being "sick" other than this constant/persistent odd cough (which docs have listened to his lungs and said is nothing...although we are going to do a chest x-ray for peace of mind).  In the past, him having a high fever with no other symptoms has always been related to his liver stuff.  His threshold for "fevers" has always been set at around 100*f.

Knowing Dylan is super immunosuppressed, its troublesome sitting back and just wondering what is going on and if something is just lying in wait.  We have yet to hear more in regards to the autoimmune stuff and the possibilities that they are pondering over.  I feel like we are always on edge and that we are always preparing for the worst.

Before transplant Dylan was on about 15 meds a day.  It was never fun dealing with this part of our life and honestly once we got a few months out from transplant it was such a relief being on so few meds (literally 2).  As you can imagine, its not fun for Dylan...yes its all he's known his whole life but that doesn't make it any easier.  He spends 4 hrs out of his day just fasting for one of these meds (1 hr before med, 1 hr after his med two times daily) and of course its always around food time frames.  It's hard, it's even harder for an 8 year old.  His life is nothing more than a medication/doctor induced ritual that he's exhausted from...even more sad on our end is he's become angry.  Quite honestly I can't blame him.  He lives a life that isn't easy for anyone, let alone a little man whom is just trying his best to be a child...although I feel he's been robbed of that luxury, which so many take for granted.

He's back on 8-9 meds again, they are talking about doing IV infusions to help his immune system (as its depleted and can't fight much of anything).  It's hard looking at his list of meds that he now takes and hearing the other steps that are being taken into account into his care.  I feel like we are reverting backwards at times.  I often times feel guilty that we have caused some of his sufferings.  If we hadn't of wanted him to be on less meds and his anti-rejection med/allergies weren't causing such major issues, perhaps we wouldn't be in our predicament that we've been in over the last 9 ish months.  These thoughts haunt me...all I ever wanted was him to live a more normal life but as of this moment, we've only reverted back to a thing of the past (a prescription medically managed existence).

I'm not going to lie, I'm feeling pretty down about things as of lately.  I often daydream of better days...not for me but for his mental state.

-Noah