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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Slideshow:
***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***

 Our lead up to this day started 36 hours prior to this photo...anyone who has done a colon prep knows the process isn't glamorous and/or enjoyable.  Unfortunately for Dylan he was doing both ends of his body, he was prepping for a upper Endoscopy, lower colonoscopy, and both being with biopsies throughout.

We left our house by 5:45 am, traffic was typical so we didn't end up at Kaiser Oakland until 7:30 am, which was plenty of time given we didn't need to be there until 8 am (1 hour prior to procedure time).  As 8:30 am rolled around, here comes Dr. Rich strolling through, he stopped and asked why we were still sitting in the waiting room.  Of course our answer is, "perhaps you should ask that of them".  Dylan was swiftly taken back and prepped for "The Dylan Way" of going to sleep.  You see in the past, when Dylan was really young, he was traumatized by gas induction for another Endoscopy, so we don't do gas...he does it his way, which is harder but it includes: oral versed, IV, and sleepy meds.  This is something we chat with anesthesia with prior to his appointment, like I did this time and they were very understanding and we left our conversation on the same page.  But low an behold when we arrive, they front desk person, back office nurses, and everyone in-between all have no clue.  I've given up on being frustrated about it, as its just simple...its going to be done this way or its not getting done.  If Dylan wants to endure an IV vs. breathing medicine that makes you unconscious, then so be it...he's earned that right to go out how he pleases. 

Things took longer than expected but Amber made her  way back with Dylan (they don't allow siblings so I stayed with Tegan in the waiting area).  Amber spoke to both the Anesthesiologists and things were a go.  The only thing left for us was to wait until they were done and hope all was uneventful.  I know in the back of our mind, we know things typically aren't just so cut and dry and that easy going.  We were about to find out that this day was no exception.

After a little over 1.25 hrs, Dr. Rich and the Anesthesiologists came and talked to us in the waiting room.  At first notice I thought it was odd that the male Anesthesiologist had blood on his pants but I was more interested in what Dr. Rich had to say.  It was in this moment we could tell by his face mannerisms that he was surprised in what he saw.  

He was talking about how is Esophagus looked decent but he could see pinkish rings in it.  He said he made his way through his stomach and out to his duodenum (this is the sharp turn off the stomach that connects to the small intestine), he said the outlet of his stomach was thickened, he said the Duodenum was thickened and he hard a really hard time, almost impossible time, getting through it.  He then mentioned his colon is thickened too.  This is about the time the female Anesthesiologist mentioned that Dylan had a little complication during the procedure.  She mentioned that Dylan started throwing up, she had to do an emergency intubation and she didn't think he aspirated anything but couldn't be 100% sure, that we needed to watch him very closely over the next 24-48 hrs for signs of wheezing, difficulty breathing, fever (Pneumonia is the fear from this).  As we were trying to figure out why or how this happened, she then mentioned that his IV blew as well and they had to place a new one in his other hand.  Dr. Rich then advised he wants a Barium Study done on Dylan, to take a closer look on how his food is processing through his GI tract.  All this was just too much to take in, literally nothing had gone smoothly from the sounds of it. 

It was surprising to hear these things, shocking actually.  But mostly, this is what Amber and I have been fighting about for Dylan.  Every time his labs go haywire, liver numbers jump up, EOS showing as high as they are...we know its an immune response, which just means inflammation.  I have asked his doctors over and over and made statements to the affect of, "if his numbers jump up, we know this affects his organ/tissues, and this constant back and forth has to have a negative effect".  They always respond with the same thing, "little bumps like this don't cause long term damage".

I literally can't even keep my mind clear, I'm so upset, mostly I'm hurt for Dylan.  Thickening of tissues, especially in your GI tract is never a good thing and for the most part its NOT reversible.  Terms like Chron's was tossed into our conversation, Eosinophilia, non specific tissue inflammation, etc...the bottom line is this, although we certainly hope Dylan doesn't have another terrible disease like Chron's, him being diagnosed with Eosinophilia is borderline very similar in maintenance....it means repeat procedures like this for life and lifelong need to be on steroids.

We have been pleading and begging with Dylan's caregivers to do more, to listen to our concern's on his constant state of up/down labs, and his always high state of Eosinophils in his system.  I understand Dylan isn't bed ridden and dieing in the hospital but dare I say brushing off his conditions, symptoms, concerns has now only complicated things and you don't get to undo that, no sorry's can fix 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.

I'll spare the long winded "this has been the longest" since we've updated, although it really has...crazy to think it's been 6 month's since last update.  Its really not for a lack of updates but really wanted to do a mass update once we had more info on a few things.

​Over this past summer Dylan turned 10 years old!  Which to me is crazy to think he is now double digits...time sure seems to pass us by fast.

Also this summer, Dylan got to go to a very special camp.  Its a camp that is put on by Stanford Children's Hospital.  Its deemed "Transplant Camp" and its for all the kids like Dylan whom have had solid organ transplants and need extra attention in regards to their camp experience, albeit food allergies, meds, and/or other special needs.  Its held at St. Dorothy's Rest in Camp Meeker California, which is part of the Episcopal Diocese of California.  It was the first time Dylan was ever away from us, he never even made it for a sleepover all night at a friends house 2 doors away, and as you can imagine he was pretty upset and didn't want to be away from us for 6 days.  In the end it was an amazing experience for him, even though it took him a few months to fully realize it..ha ha.

The nice thing about him going away this past summer was once he got back to school this year, which now he's a 5th grader and in his final year of elementary school (and when did that happen!  Ugh, its goes so quickly), he had less drama going to his 5th grade camp outing...even though it was only for 3 days and 2 nights.  Seemed like a piece of cake but it was made a bit more complex because the organization couldn't/wouldn't be responsible for Dylan's allergies and/or meds.  So we had 2 options: 1- he would be discluded from camp with his friends or 2- we would have to provide him with all his meals pre-prepared.  So of course we did what any parent would do, we made a ton of food so he could feel "normal" like the rest of his friends.  So he was on his way with an igloo cooler packed with food and got to have the experience of being out at the Marin Headlands alongside his friends. 

Throughout the last 6 months, there has been ups and downs, Dr. visits, an MRI, Pneumonia, tested EBV positive, etc.  Its kind of a never ending cycle as we've mentioned over and over throughout the years. 

But one of the more breaking news on our end is...over the past week we've been informed that Dylan has received FDA approval for IVIG IL-5 treatments.  To rehash this a bit, here is what I mentioned previously in my last post:
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"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."  

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We don't have a set time table or date to start any of this yet, as of right now they're trying to figure out protocol for Dylan (remember this isn't a drug used over here or even for this condition he has, so  therefore he is more or less the baseline when it comes to this).  It's a bit to take in, we worry about what if it doesn't work, or worse...what if it has a negative affect.  But mostly, we have lots of hope. 

When I came about doing my son's website and furthermore the journal entries that I personally do I never really thought about how it may impact others. I often times refrain from doing more journal entries b/c I'm not looking for sympathy from anyone, I'm not asking for a handout, and mostly I'm not trying to place our burden (our pain, our hardships, our scenario) on anyone...All to often folks read "into" what some write/say and I never wish to portray ourselves that way. I simply put...am putting my thoughts on his journal b/c its a good way for me to clear my head, to keep from going insane, and/or worse. I do all too often not take that step these days b/c I just don't want to have folks look at Dylan poorly based on my views or how I see the world (most often).

We do the best we can with what we got...we aren't perfect and nothing about this life has gone perfectly but its our life and I hope by sharing it, others see it could be worse....you could be in my shoes (and on the flip side, I know our scenario could always be much worse as well...its a two way street and this life has shown me that). I'm fortunate for what we got but that doesn't make it any easier...its still tough.

-Noah
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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