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   

A new year is upon us but its not without its hurdles.  Over the last 8 months Dylan has been dealing with rejection, additional meds, biopsy, and the typical run of the milll that comes along with liver disease.

Over the past month Dylan was able to be weaned off Prednisone and had 2 sets of good labs, then about 1.5 weeks ago he had a set of elevated labs, which we retested at LPCH again last week and they were showing a trend downwards, we were hopeful we were in the clear.  Our transplant team advised us to retest again on Monday, which we did.  As the results came flooding in late at night we knew that our hopes and wishes for the new year were going to take a bit of a turn towards the complicated side.  Our team first mentioned that Dylan "most likely" would need another biopsy and they would touch base in the am after the on call doc could review and discuss with the rest of the team.

Yesterday was kicked off with a mid morning call from our transplant coordinator.  If I haven't said it before, I must say it now and/or again...Sarah is a blessing to our family, she is always available to us, always compassionate, and she's downright a wonderful person.  As with so many whom dedicate their lives to this work that they do; they truly do it for the love of these children.  We have always felt so fortunate to have these folks in our lives given that we are engulfed in this life and our only sanity is held in these folks hands and their continued commitment to our child.

We were advised that unfortunately Dylan needs to restart back on Prednisone (15mg dose), as they suspect the onset of rejection.  I don't think I need to go into details about how much I hate this drug.  Its the one that I call the devil and I feel sorry for Dylan and the changes that he is forced to go through from this medication; its not just the outwardly appearance (massive weight gain), its the horrible emotional side effects of this drug that I can't stand.  He becomes so enraged on it, short attention span, and an overall constant state of frustration.  It's not fun to watch or deal with.  I feel bad saying that but he is very difficult while on this drug to say the least.  Needless to say we contacted Dr. Rich (Dylan's Kaiser GI doc) and had him put in the Rx for the med.  Within a short time we were at Kaiser Pharmacy and Dylan back to ingesting the med.

In addition, the doc wants further testing done on Dylan.  They want to see if he has some level of autoimmune hepatitis going on.  Ever since birth Dylan has had extremely high Eosinophils (white blood cells of the immune system that fight parasitic infections and control/associated with allergies).  Every time Dylan has had a biopsy of his liver, there is always Eosinophils found.  The preliminary "thought" which at this point in time is nothing more than that, is that potentially his Prograf (anti-rejection med) which is known to cause major allergy issues, is causing Dylan's body to see his liver as an allergy and fighting/attacking it...as opposed to ignoring it.  Amber and I have mentioned Dylan's allergy related stuff to LPCH many times, he has been tested at Kaiser multiple times as well, and we pushed to have Stanford allergy dept to take a look into his case just last year (ironically around this same time, as we were in the hospital for a biopsy as well).  Back then they advised they didn't see any reason to continue with looking deeper b/c they didn't feel there was a direct correlation...so that was that.  But now that our transplant team wants this investigated further, perhaps we will get some much needed insight or perhaps its a dead end and we are left to look into something else.

Although our new year has started in a complex manner, just as last year and year before.  I suppose it doesn't mean this is how the remainder of the year will trend.  I will say its frustrating, its complicated, its difficult, and we have no means to know how or where we will end up.  All we can do is be hopeful that this journey brings us one step closer to peace, happiness, and above all...health in this new year.

-Noah

It has been awhile since our last update. I am sorry for keeping those of you who don’t follow us on Facebook hanging. Dylan’s health has been “stable” since his hospitalization. The dose of IV steroids and tapering dose at home (which he is still on) seems to have corrected the rejection he was fighting. We have fought very hard the past 6 months to get his liver in the great working order it once was. Dylan continues taking the Prednisone and increased dose of his Prograf (anti-rejection medication). He has been getting labs done every two weeks to follow lab values and make adjustments as needed. It feels we live our lives two weeks at a time. Never really knowing what is in store next. If his numbers are good we get to stay on the course we are on, if they come bad our course is diverted in a different direction.

Dylan's liver numbers have consistently been getting better over the past two months. Each time they improve more and we are able to lower his Prednisone dose. Due to his rejection episode we have been running his Prograf at a higher level in his blood. Before the rejection his troft level (the level of medication in his blood 12 hours from his last dose) was kept in the 2-3 range. Since his rejection we have been keeping his level between 7 and 8. This dose has been higher than he was ever on, even immediately after transplant. His system just like lower levels of the drug. It has been necessary though. We have had to "reboot" his system into thinking his liver is his own. Not an easy task.

Sadly, during this fight, his kidneys were irritated in the process. One nasty side effect of the Prograf is it can be very hard for the kidneys to process.  It is known to cause nephrotoxicity (a poisonous
effect of some substances, both toxic chemicals and medication, on the kidneys). For the past six months Dylan's Creatinine (a kidney function test) has been creeping up. I noticed that Dylan’s urine output had slowed down drastically last week. He had only been urinating a couple times a day despite his intake. He was constantly thirsty and drinking water. Knowing his kidney function was leaving something to be desired it obviously concerned me. At that time he was also running a low grade fever. After consulting his transplant coordinator I took him in for labs and a urinalysis. I can't say I was shocked at the results. 

It is always hard for me to see the numbers come pouring in. When we have his levels checked at Kaiser I get the results before any doctor and usually in the middle of the night. The levels for his kidneys were above the "normal" range and were pretty high for a child in Dylan's age group. Oddly, he was also having abnormal levels in his red blood cells. He was extremely anemic. Now, I am going to admit something here. I suffer from some serious post traumatic stress disorder. Watching your child vomit blood is not something easily erased from your memory. When Dylan suffered his GI bleed I had his labs done just prior (not knowing what was wrong with him). The lab results from that horrible day and his current results were far too similar. I could feel the stress building up in me. Now, I didn't really think he was having another GI bleed , but seeing those numbers seriously made me question what was wrong with my little boy. I emailed over his results to our coordinator so she would have them first thing in the morning. It was a long sleepless night for me. Thoughts were racing and emotions were high.

We heard back first thing in the morning. I was told to lower his dose of Prograf immediately and she would get back to me after consulting his team. She also reassured me that he was not having a bleed. Her guess is that he was fighting a virus of sorts and that it was suppressing his bone marrow. Not exactly a comforting thought, but much better than the alternative. Later that afternoon I got a phone call confirming that he was to stay on the lower dose and that we would repeat labs the following week.  We all went on about our week. The kids enjoyed school activities, parties and some trick-or-treating on Halloween. Dylan was a skeleton and Tegan was a peacock.

Saturday morning we woke up to another surprise. I thought Dylan had been replaced with some other child. He was so swollen and puffy I could barely recognize him. I sent his coordinator a text and asked her to look at a picture of him. She told me to call  the on call doctor at LPCH right away. There was the usual back and forth one would expect on a weekend, but I did finally get in touch with the doctor at LPCH and we came up with a plan. She told me Dylan needed to be seen and that his labs should be repeated. I called and made an appointment in urgent care for later that afternoon. We needed to see where his numbers were and determine if he was going to have to be admitted or not. The Kaiser doctor was great. He walked in and asked me what I needed him to do. I guess he could tell I was on a mission. After a quick exam he ordered some labs for Dylan (STAT) and we were on our way.

After a short two hour wait at home I had results and emailed them over to LPCH. The on call doctor called me and said she was pleased to say Dylan's labs were stable and that all the "scary" possibilities were not a concern for her ( I already knew that). His liver enzymes were up a tiny bit and his red blood cells were even lower (increased anemia), but his kidneys had not gotten worse and she felt safe letting him wait until his clinic appointment we had scheduled Monday. It feels at times there is never a true break for Dylan. While driving to the clinic Saturday he had a complete break down. Tears, anger, and frustration overwhelmed Dylan. He doesn't want to do this anymore. He wants a break from all things medical and I don't blame him.

Monday we made a trip to Lucile Packard for a follow up. It was the usual 2 hour drive there. Tegan slept the whole way. Dylan and I just talked and sang some songs. He does travel really well. At our appointment we discussed what was going on with Dylan. His doctor felt that his kidneys took a hit from the high doses of Prograf, but was hopeful that with the lower dose he would bounce back unharmed. He also felt that his bone marrow was being suppressed by some type of virus. We are going to recheck his EBV and CMV levels next week to make sure it is not either of these. Both of these viruses can be pretty scary after transplant. We were also told to repeat that rest of his labs next week as well. If his liver is still happy we will lower his Prograf dose again and hopefully stop his Prednisone for good. We left and headed home with a solid plan. Little did we know we weren't done yet.

From Monday to yesterday Dylan started having breathing issues. I noticed that with every breath out Dylan was grunting and he had developed a funny cough. His lungs sounded very clear (Yes, I have a stethoscope. I also have an otoscope. You just never know). Now, here is where life is unfair for Dylan. He had been to the doctor twice and labs twice in less than a week, but I had to take him back in. Post transplant with water retention and low blood counts can be a very bad situation very fast. It is very possible to have fluid "push through" into the lungs and cause pneumonia. With all that he had going on I couldn't take a chance. I made him an appointment and took him in AGAIN. His regular doctor did not have any appointments, but I got him in with another one that I like. I have developed a list of "approved" doctors at Kaiser. There are some that I don't work well with. We did run into his doctor in the hallway and he said he wanted to see Dylan when were finished with our appointment. It was a quick appointment. The doctor had us do a chest x-ray to rule out pneumonia. I was really proud of Dylan. Since I had Tegan with me I couldn't go back there so he went back alone and did a great job. He is growing up so fast and amazes me everyday.

The results were "unremarkable". Fancy word for everything looks good. We were led to his normal doctor's office to wait for him. When we first met Dr. Morales Dylan was 10 months old. This
doctor has kept me sane and led us through so much. He never questions my feeling or thoughts and ALWAYS validates me. I have joked that he is the only one who gets "my crazy", but it's true. I remember being on the phone with him as Dylan vomited blood. I remember hanging up on him and I also remember him calling us in the ER to check on him. Dr. Morales is a remarkable doctor and person. We are blessed to have him in Dylan's life. Yesterday he just wanted to check in on Dylan. He told him that he was so proud of him for all he goes through and how well he handles it. He said he just wanted to let Dylan know that he is always checking in on him and that he is always on his mind. Like I said we are blessed to have this man in our lives.

For now we are starting up his asthma meds again. We will need to be watchful for thrush in his mouth since he is still on the Prednisone, but I hope it will correct the breathing problems. We will recheck labs either today or early next week to make sure everything is improving with the medication change. As always we would like to thank you all for following Dylan's journey. It really does mean the world to us.


-Amber